Bang Bang!

Andrew has started shooting sports and who else is his coach...but me!! I can count on one hand how many times I've shot a gun, although this is just BB gun, Drew is quickly learning how big of perfectionist I am! :)

I was helping him with his stances tonight and at one point he was trying to tell me how to do it and I said, no you need to do this and that and so on and so on. As he was correcting me, the instructor came around and said...actually your mom is right! I have held that over his head!

I am loving this little activity we are doing together!

Early Christmas

Driving home from Omaha this a.m./afternoon, I got to thinking about a year ago and what we were doing. A year ago...we (Chris and I) were driving back and forth from Omaha 3 days a week for vital stim therapy. We met an amazing speech therapist, as I have mentioned many times before.

A few weeks ago, after having spent part of August, all of September and most of October with pneumonitis, we revisited our pulmonologist and he asked the question: Do you think he has allergies?

I was adamant that he didn't because it wasn't like my older boys that had been diagnosed. So, we had a little discussion and we decided to test him anyway, since our deductible was met. Sure enough! He had 14 out of 15 positives and he was started on Zyrtec daily along with an inhaler twice daily and 2 inhalers as needed! Whew...that's a lot, but he takes it like a champ!

At the same time we met a new neurologist to Omaha at Boystown and immediately liked what we saw. She was so good with him and joked around and was very down to earth. She increased his seizure medication to the minimum recommended dose and WHOA! What a difference!! You can always tell he is feeling better after a dose increase because he gets wild and in to everything!

We have been doing so good and he had gotten in to a few drinks (7up and chocolate milk) without thickener and much to the moments after me holding my breath...he didn't choke, cough or sputter, so it built my confidence and I spoke with Jen and we got a swallow study lined up! I knew it was because we had his allergies under control.

Today we had our swallow study and he passed!!! Not totally. he aspirated some nectar, but he was also crying at the same time! He did well with thin too with aspirations on large boluses, but managed small boluses well. She said she was comfortable with going to nectar and VOILA! Here we are...after a year of honey thick liquids we get to slowly introduce nectar thick to him.

I wanted to cry as we walked out of the flouro room! I did end up crying when I called Jason but it was all tears of joy!

He has 2 new words that he is using repeatedly...hat and up. He also throws in Papa and ball. We celebrated his birthday last weekend and he has really enjoyed playing with his toys. I'm so excited to see what is to come with him.

Matt-isms

Matt is always one to come up with a wise thing or two to say. Tonight he was on a roll.

Early in the evening we were talking about Christmas gifts and who had called the most beetle bug car colors out for the day. I said I was ahead and of course he argued. I said...I'm sorry son, I think you have it backwards. His reply...I have it frontwards, you have it backwards.

Then later at my mom's house while we were working on his turkey project, my sister and I were giving Andrew a hard time about negativity and we were saying he was a negative Nancy, then she said she was going to start calling Drew a Debbie Downer and so Drew asked what that meant. Without skipping a beat, Matt pipes up...it means you're a loser!

OF COURSE we corrected him and educated him on how that was not nice and inappropriate and Drew was a good sport.

For those that are around Drew for a long time, you will learn that he talks...A LOT! He was once again on a non stop roll and Matt all of a sudden goes...all I hear is blah, blah, blah, when you talk!

Yet more correction.

He had another good one in their tonight, but I can't remember what it is. This kid definitely has his mother's quick wit. Not that Jason doesn't have it, it's just that he isn't as quick to voice it! :)

Dos!

Matthew has 3 little hispanic girls in his class. After the first day of class he came home and was so proud of himself.

He said..."Mom, I said 'Hola' (sp?) to them."

I then asked what they said in return and he explained that they shared the same sentiment. He then went on to say that when they said good bye that the one little girl said "Dos."

Andrew without missing a beat says..."That's the number 2!"

I had to chuckle. Matt argued and of course Andrew had to win, but we got it smoothed over.

Later when talking with my sister we decided that he probably meant "Adios!"

Set Back

So...I was so up on a high for how well we are doing. This week however, we've had a minor set back. Our seizures are back after not having any for 2 months.

Thursday, he was working with his therapist and in the midst of therapy he had an atonic seizure...the ones where he loses his tone. I just had him recoup, but I'm pretty sure that it scared the heck out of his therapist. Then shortly after therapy he had another one and he was standing up and fell and hit his head.

Since he's been very unsteady on his feet and it comes and goes. I'm sure I need to get a call in to Denver Monday, and am expecting them to up his meds, but it remains frustrating. I know he's off because he's been content to lay on the floor and play tractors. Usually he's climbing the curtains.

I guess we will see what next week brings.

Good Things Come to Those Who Wait

We've had some more exciting things happening around the house lately.

On Aug. 6, we went to Omaha and participated in the Nebraska Epilepsy Walk with 19 members of our families. It was a tough day for this ole mom. It was emotional for me because it made it real. The last 6 months have felt like a dream, like we would wake up from it, but we are learning that our reality is different. The whole family had a great time and we hope to have more participating with us next year. It's a great family event to plan on year after year.

ANYWAY, that same weekend Chris had another little sinus infection and cold as I was getting over bronchitis. He started to drain copious amounts of green goo from his eye that was directly above the tube. So we pulled his NG and were told to put it in the other nare. It was like immediately both eyes started draining copious amounts of green goo and so after some texting with our family physician, he said to leave it out and it's as good as time as any for a trial run.

I am happy to announce that we have been tube free for 2 WEEKS!!! He is taking up to 8 ounces of honey thick liquids at a time and on Tuesday of this last week he started to drink out of a sippy cup. Now, mind you, our sippy cup has the spill proof valved removed, but at least it's not an all out mess.

His seizures seem to remain under control and Denver has called to check up on him once since we've been home and continue to be very happy with his progress. They drew one set of labs and they came back negative. Although that is good, still no answers. I'm learning to forego answers with progress!! :)

Chris starts speech on Monday and I am anxious that we will start making leaps and bounds in that category. I should be prepared for baby steps though, as that's about how quickly Matt did it.

This coming Tuesday the two big boys start school and although Andrew says he is not excited, I know he is. Matt is clueless, as always. He doesn't miss much, he just doesn't worry about it. He will go where and when I tell him to go. Andrew on the other hand needs to know what we are doing 6 months from now! They are complete opposites.

Floating on a cloud

So..minus the slight bronchitis set back for me since we've got home...I've been so excited with the progress we made in Denver.

Wednesday they informed us that he had no seizures while we were in the hospital...of course not why would the kid do something that convenient! :) However, they did see more discharges but they were rare. His EEG is still considered abnormal though.

As far as the discharges go. Chelsea explained them in a way like his brain turns on a switch to have a seizure and then quickly shuts it off, therefore not having one, but the trigger is still there. She said this is very promising because it means that his meds are keeping him under control.

She said that she will have to tweek them as he gets bigger and needs more, but her goal is for him to be seizure free for 2 years and then wean him off his meds. However, that means no seizures, not even 1 seizure. But we will get there. I have hope now.

She kept saying that she was so excited and couldn't believe how well he was doing! So she decided that we didn't have to be back to Denver in 3 weeks, but instead 3 months! MONTHS!!! Can you believe it?!?!

Instead in 3 weeks we will had to Omaha, to get in 2 more treatments with our favorite speech therapist, Jen. I'm hoping we are close to no NG by then. He's taking 3 oz orally 3 times a day. I have to get him worked up to 4 to get him off his bed time feeding, but I'm hoping that he will continue to do well and Monday we will start 4 oz with meals and at bedtime. I just need him to suck through a straw, but hey...if that's the worse thing he's not doing...FINE BY ME!

The big boys are bummed that they don't get to go out to Denver with us, but they will live. They were happy to see us home!

Lighter

If you could see my face today, you'd see the large smile that is on my face.

Last night was another long night, but it is more so because I wasn't feeling well and I was crammed on a little bench type bed with my ginormous husband. Chris slept well.

The epileptologist rounded on Chris this a.m. after going over his EEG and they reported that he had been seizure free, but had what they called discharges from the back of his brain. YAY...we got location! :)

These discharges...if i understand right..are the brains attempt to trigger a seizure, but it doesn't get to a full blown seizure. This made me happy and the epilepsy team happy, because he is still having triggers but it's not getting to a seizure. They said that this is most likely because his meds a right where they need to be.

They have been very happy with his progress and at first we were going to have to be back here in 3 weeks, but they changed it to 3 months! :)

They said that his control is good right now and they are very happy with his progress. They will keep him until tomorrow to see if he has any other activity.

End to a long day...

We are at the end of Day 1. Man it's a long day sitting here staring at each other, watching a 19 month old bounch off the walls. He's walking around with wires sticking off his head and a back pack on. They have a black thing around the wires to keep them contained so at times he looks like a little sumo wrestler going to school!

We don't have much back yet. They got his lab drawn...if I didn't say that earlier...and so we will just wait to see what they say in the a.m. Supposedly they will give us a little synopsis as to where we are at this point tomorrow a.m.

I'm not praying at this point to not have any seizures. I'm praying for answers. Although no seizures would be a fantastic bonus...I have to be realistic.

We got an amazing surprise today from Amanda that brought tears to my eyes. It was a little message she submitted from the hospital's website. Chris liked the lion on it and it was great to hear words from back home. One thing about our stay in Omaha was friends and family could come visit us. In Denver, all we have is Amy...who's swamped and Lisa in Cheyenne. Needless to say, the quick note was such a pick me up in this tiny lonely room!.

There is another family here from Hastings, some where in this hospital. I wish I could hunt em down!

Denver Check In

We got checked in this morning bright and early! We were here by 715 and they had us up to our room shortly after.

Chelsea came and met with us again and visited about his history and when I said that we have been abscence seizure free since the end of June...mind you they are easy to miss if you are running around taking care of a family, but he doesn't pause anymore...she lit up! She even cheered for him when I said that he started walking 2 weeks after we adjusted his meds! :)

He's now hooked up to the EEG machine and it was horrible getting hooked up. HE doesn't like the air they have to blow on him to dry the paste. Plus being held down is no fun.

They were originally going to take him off his meds, but Chelsea said this morning that they are leary to do that where he has such good control now, that if they take him off, it could be months before they get it back. She then asked how long we were prepared to stay...ugh! I hate that question! So we shall see.

I'm so glad we came here. THey have a tech team watching his EEG as well as the epilepsy team and we will be updated every morning with what's going on.

Not much more at this point. I will update as I can. Just pray they find what is goin on! It will be so much easier to treat him then.

Get Ready...Set...HOLD ON!

Wow! I'm getting ready to put my jet pack on to prepare for this next week!

I'm working tomorrow then we start the craziness. We head to Omaha Saturday then we are off to Denver on Sunday for Chris' admission to the Children's Hospital in Denver.

I have talked with a couple of parents and they have also been impressed with the hospital and they do lots of things that we need to bring back to this area. The one that touched base this week was that the welcome coordinator called and set up our hotel for us for Sunday night. Then she gave us some helpful tips along the way.

Chris will be hooked up to an EEG monitor for 2-3 days. They will back off his meds to attempt to trigger a seizure...scary. He will also have his third round of genetic testing at this time.

The big boys are gonna stay with Grandma K. It's just a lot to process in the next few days. Please keep Chris in your prayers. We trully hope that they can find something while we are out there.

Time Flies When You're Having Fun

Wow have the weeks flown! We are looking at school in a little over a month and 2 trips to Denver in between!

We had our follow ups in late June for Mr. Christopher. Dr. Thomas (Pulmonology) and Dr. Goebel (ENT) were very happy with him. They both accused him of being a different kid. I agreed. Dr. Goebel couldn't believe that his sleeping at night was so dramatically affected. You now have to walk clear in to the room to see if he is sleeping or not.

Our swallow study with our favorite Speech lady went well, but not as well as I had hoped. Later Jason and I had discussed that we both thought that he would pass and they would just yank his tube. We were both wrong.

He is back to his baseline - honey thick liquids - as he was in January, but since Jen knows him so well, she was afraid to pull the tube because he fatigues so quickly when he eats so we are slowly introducing fluids back to him in staggering.

We haven't gotten very far, as the first couple weeks he got a cold and it settled in to his chest, so Jen backed things down, but we are doing better. And if Miss Lily (his cousin) would leave his tube alone, we wouldn't have to put it back in! I'm kidding, but she did pull it out one time because she tackled him for a cookie...atta girl!! :)

His walking is getting better by the day. He's now trying to run some days and takes about 3 steps and he's down, but he tries. He's started to do therapy at home with the special ed instructor and if Matt would leave him be during it, things would go well.

He's still very non-verbal other than up so we do quite a bit of sign language - his favorite is eat!

We head to Denver in a week for his EMU (epilepsy monitoring unit) stay. He will be hooked up to an EEG for 3 days and they will reduce his meds and stress him to see if they can capture a seizure. I hope they find something or can tell us something. They will also be doing some more genetic testing.

So before I know it, we will be shopping for Matt's first day of Kindergarten! Yikes!!!

Parable of Motherhood

When you walk in to Bergan Mercy Hospital in Omaha, there is this beautiful piano that automatically plays music and then there is this little passage that is with it. It reminds me of my Grandmother's and mother and even my journey....I wanted to share it with you.

Parable of Motherhood
ByTemple Bailey

The young mother set her foot on the path of life. "Is the way long?" she asked. And her guide said, "Yes, and the way is hard. And you will be old before you reach the end of it. But the end will be better than the beginning." But the young mother was happy and she would not believe that anything could be better than those years. So she played with her children and gathered flowers for them along the way and bathed them in the clear streams; and the sun shone on them and life was good, and the young mother cried, "Nothing will never be lovelier than this."

Then night came, and storm, and the path was dark and the children shook with fear and cold, and the mother drew them close and covered them with her mantle and the children said, "Oh Mother, we are not afraid, for you are near, and no harm can come," and the mother said, "This is better than the brightness of day, for I have taught my children courage."

And the morning came, and there was a hill ahead and the children climbed and grew weary, and the mother was weary, but at all times she said to the children, "A little patience and we are there." So the children climbed and when they reached the top, they said, "We could not have done it without you, Mother." And the mother, when she lay down that night, looked up at the stars and said, "This is a better day than the last, for my children have learned fortitude in the face of hardness. Yesterday I gave them courage, today I have given then strength."

And with the next day came strange clouds which darkened the earth, clouds of war and hate and evil--and the children groped and stumbled, and the mother said, "Look up. Lift your eyes to the light." And the children looked and saw above the clouds an Everlasting Glory, and it guided them and brought them beyond the darkness. And that night the mother said, "This is the best day of all for I have shown my children God."

And the days went on, and the weeks and the months and the years, and the mother grew old, and she was little and bent. And her children were tall and strong and walked with courage. And when the way was rough they lifted her, for she was as light as a feather; and at last they came to a hill, and beyond the hill they could see a shining road and golden gates flung wide. And the mother said, "I have reached the end of my journey. And now I know that the end is better than the beginning, for my children can walk alone and their children after them." And the children said, "You will always walk with us, Mother, even when you have gone through the gates."

And they stood and watched her as she went on alone, and the gates closed after her. And they said, "We cannot see her, but she is with us still. A mother like ours is more than a memory. She is a Living Presence."

But Mom!

The boys went to the pool today with one of the girls that babysit for me. After I dropped her off, Matthew was arguing with me as to whether or not he could go in to the grocery store by himself and get 5 things. I told him no because as most of those that know Matthew...it takes him 15 minutes to put his shoes on...and that's with me tying them!!

I told him that I would go in with him and he kept arguing. So I said...Matthew if you keep arguing with me you won't get to go in the grocery store.

His reply...If you'd let me go in the grocery store by myself we wouldn't be.

He is way to wise for his age!! :)

And He's ...WALKING!!!!

I am writing this as I sit in the kitchen and watch Christopher attempt to walk across the kitchen holding a wooden spoon in one hand and a giant potato in his mouth!!! He doesn't get but maybe about 4 steps, but when he's not working on becoming the next Iron Chef or Lay's potato chip man...he can make it 4 or 5 feet at a time!!!

Not very far, but we are getting there! Anytime he wants to get some place far he has to crawl, but he'll catch on...he's still working on his balance. The other funny is that any time he stands up...he says...up! One of his 2 words! :)

I wondered if this wouldn't happen after he got his seizure med increased. I can't wait to get to omaha for PT tomorrow to show Stacy what we are doing! :) The boys keep running to me yelling...He's walking...He's walking and with a smile I get to say...get used to it boys...it's gonna keep happening! :) We have a ways to go...but hey...it's steps! :)

I talked to Denver again on Monday, actually talked with our provider out there. It's been the 6th time I've talked with them...SUPER impressed. They said that he can't do his VitalStim therapy which is the therapy he was doing for his swallowing 3 days/week in Omaha. Slightly disappointed, but we will see what his swallow study says next week and then go from there.

I asked about his EEG that was done in March and they said that although it was abnormal, it was only MILDLY abnormal...I'll take it! She said that it was more indicative of a child that was delayed. It gives me hope that we will grow out of this. Hopefully we hear back from genetics soon and hear about our sotos syndrome results.

But with that, I asked why we see so many outwardly signs then. Chelsea went on to explain that it takes months, sometimes years for people to catch a seizure on an EEG. (Not hoping for the years!) She said if he's not having seizures...we aren't going to catch em. So when we go back in July they will most likely stop his medication or decrease it to see if they can capture a seizure.

They will do some lab when he's out there and I'm not looking forward to the poke. Next week we head to Omaha for our swallow study. I am very hopeful that we will get our NG out, but as I told my aunt today...I will be heartbroken if we don't. I will get over it, but he's wanting a cup so bad!!!

I have added a link below, as well as on my FB page the link to our epilepsy walk page and hope that you can make some donation for the LIFE organization. Thanks SO much in advance.

https://sites.google.com/site/moosetracks4epilepsy/

General Delay

Since Denver, there has been one thing that has stuck with me...general delay. It's been hard for me to accept this and this is a very selfish mom moment, but as I watch my 9 month old neice learn to walk...my heart breaks.

We errupt in joyous outbursts when he takes a couple of steps. At any point he can just take off walking...but he doesn't. They have always said that one day he WILL walk, we just don't know when. I'm just not a very patient person. His PT says that his coordination will come when his seizures are under control.

I'm learning to dislike epilepsy a lot. I know that there are thousands of children that are worse off than Chris...even in the realm of epilepsy, but this mother just wants her son to be 'normal' and walking and doing everything he should be doing at almost 18 months. It's hard because I am helpless. I can't do anything for him, but snuggle him and love him and provide the best care for him.

So, technically, I'm not doing nothing and Chris is making improvements, but it's still hard to swallow. My evening prayers will just continue to pray for a cure.

Epilepsy Walk

I forgot to add on my last post that the Nebraska Epilepsy Walk is in August in Omaha and we will be participating. If anyone would like to join our team or make a donation to our team for epilepsy research, let me know.

I will be posting a donation link later. Any amount is greatly appreciated. Our team name is Moose Tracks 4 Epilepsy: Crusading for a Cure for Chris.

We'd love any walkers to join us!!! :) Just email me: jkoehlmoos@gmail.com

Denver

Wow, I can't believe that it's been since surgery since I last posted. Okay, I can because it's been crazy busy. I've been working lots.

Our 2 weeks home since Omaha have been busy and filled with some excitement. Chris has taken to the seizure meds well and after the first week started to take a few steps independently. Not many and when he doesn't want to do it he goes completely limp. The other night he was ping ponging back and forth in between the couch and rocking chair. SUPER excited. I can't wait for his PT to see him on the 22nd.

His NG feedings continue to go well. He leaves it alone and we've only had to put it back in once since we've been home...SUCCESS! :) We hope to get that out on June 21. We shall see. Some days I have hope and other days I don't. We did cheat a little bit the other night and I let him wet his finger and put it in his mouth. His eyes pretty much rolled in the back of his head with having something wet in his mouth again.

So Denver...I hadn't slept much in preparation for it and had just as much anxiety not being around the big boys. The last time I left them for a couple days it was 8 days later before I was home with them again.

We left on Sunday and made it out okay. Thank goodness for our GPS and my co-worker Stefani or we would have been clueless. Our appointment was at 12:45 and around 11 a.m. I started having anxiety as to whether they gave me the appointment in my time or theirs. They said when we made the appointment that if we were 15 min late, we would have to reschedule. Jason didn't help...he fed in to my psychosis by saying...you're right...it probably was our time and as I'm getting ready...i was having chest pain at the thought...however, we arrived on time! :)

We met with Kristie Stilley, a PA and at first I was worried that we were only seeing a PA, but she was AMAZING. Now, I don't mean ONLY a PA, but my thought was...I don't want to drive 8 hours to have to come back to see the other guy. Anyway, we went over the same questions we have been over 1000 times and new ones that I never thought to notice, like if one side was affected more or not.

I learned he is having 2 types of seizures...drop seizures, where he loses his muscle tone and falls (the kind that triggered all of this) and the absence seizures where he just stares blankly into space for a few seconds. The good news is she said the drop seizures usually do not indicate any type of brain injury...YAY good news.

Then she asked about his history and family history and was looking confused the whole time and I was annoyed at first until she explained that there is no reason in his history for him to be having seizures. He didn't have a horribly traumatic birth (maybe for me) and there is no HUGE family history of seizures, just my aunt. So she said the FIRST step was that we needed to find out WHY he was having seizures. Something we hadn't heard yet. If we find out why and what kind they will know the proper way to treat him.

Then she talked about doing a 3 day EEG where they will admit him to the hospital and then monitor him with an EEG "hoping" to catch a seizure. This statement alone made me feel better for the fact that they can be missed. He will do good for days and days and then will have days where he has lots. I think in Omaha, we were having good days, hence the normal EEG. She was going to try to arrange to do it while we were out there, but couldn't, so we have to go back at the end of July. The good thing about doing it in Denver is that the epileptologist will be close by also watching it...or whatever they do.

She also upped his medications because I had said he did amazing the first week on the new med and then has been going backwards a little. So she upped it and hoping to find more of a dose that works for him, since his dose now is pretty small. She also prescribed an emergency med, which she was shocked we hadn't had yet. This made me feel better. I know we hadn't had a BAD seizure, but like she said...doesn't mean he won't. The funny part is that it is given rectally and after they gave us instruction on how to use it and we walked out Jason goes...That drug goes where?

She then said that they want to talk to our geneticist about some seizure specific genetic testing that may tell us a lot if we don't have other answers from the testing we've already done. I didn't even know this was an option.

I gave her his MRI and his first EEG, but she was unable to open them up so she said that she would call this week or next with what she found out. Then we talked about not being able to get the one from Children's and she said she would work on it! :)

The last thing she shared was to call her if he had any seizures out of his norm or if anything changed that I was concerned about. Something else we hadn't heard yet.

By the time we were done with our 2 hour appointment, we had seen Kristie, another neurologist and they had consulted with the epileptologist. For the first time since his diagnosis, I feel like we are going somewhere. Before I felt like it was...here take this pill...here take more of this pill...here take this new pill. We weren't getting anywhere.

We will ravel to Denver the end of July for the EEG and I was nervous that he would have to be hooked up for 3 days because when we did the 24 hour one, he had to stay in his crib basically. Thankfully however, he will be able to move about a room in Denver.

So we headed to Omaha today to get the big boys. Jason wanted to take them to the zoo. Plus Andrew turns 8 on Saturday and we are SO happy we get to spend the day with him. We celebrated last weekend, but it's still not the same. We will head back home Thursday and get stuff done around the house before we head back to Omaha in 2 weeks.

Christopher was SO excited to see the big boys tonight. He followed them EVERYWHERE...even to the shower. Then when we were putting them to bed tonight we had the big boys in their bed and Chris in the crib. Chris refused to sleep in the crib, but the minute I put him in the bed between the big boys, he was out! After he had been out long enough though...I moved him to the crib.

Thanks for all the support and well wishes. I ask for prayers for a little girl who is 4 that will head to Denver at the end of the month for seizures. She has status epilepticus which can be life threatening and her seizures are not well controlled. She needs lots of prayers, as well as her family, that they can find something to help her.

Surgery Day

Wow, this day has been exhausting.

We were up bright and early as they were taking Chris to surgery around 6:30 this a.m. He and I both did well until they wheeled him out of the room, but then my heart melted as they "oohed and awwed" over him as he wheeled through the surgery department.

Dr. Goebel came in and visited us. Said it would take about an hour and that should would take care of him like he was her own. Have I mentioned that I love this woman?

As any mom would do...I watched the clock and when the hour mark passed...my chest pain sat in. My anxiety level started to raise and I was 30 seconds away from pacing when Dr. Goebel came out for report and stated that he was doing good. Said that he was a little stridorous and that she gave him steroids for and he had received a shot of morphine, but otherwise was doing good.

She had pic of his scope and let me say...WOW!!!! In the picture of his adenoids she said there was supposed to be an open black circle and his was closed shut with adenoids. When you looked at this airway/throat, his tonsils were about closing that off as well. We were very lucky to not have other major issues. She stated that she has never seen tonsils that huge in someone his age ever!!! And this is one experienced cookie!!

It was a huge sigh of relief, but a huge sigh of somewhat frustration as to...how did we miss this? Could this be our problem all along. Dr. Goebel said that although all tonsil tissue grows, he could have gotten some type of infection that made his worse. It would sure explain the last 2.5 months we've been having. She also said that there was no way he could have effectively swallowed with these tonsils.

We got to see him in the hallway and he jumped in my arms. We got back up to the room and I laid him in bed. One nurse was like...they prefer to be held. Although I'm sure she's probably right...he flails so bad. So I crawled in the crib and snuggled up next to him.

Dr. Thomas showed up shortly after and goes...when does he go to surgery...been there done that...she's like...WOW! She came back in. Said they changed his feeds and that she wants to repeat a swallow study in 4-6 weeks, after we go to Denver.

Stated that we have a 50/50 chance of things getting back to normal in the swallowing category...remember our normal is honey thick liquids, which i will be happy with.

The afternoon was rough. He was having pain, he was fussing and he wasn't tolerating his bolus feeds, not to mention not wanting anything oral and refused to swallow his own spit. It was a long afternoon. He rested off and on, but not good rest. When he was awake however, he breaths a lot quieter than he ever has.

We finally got on top of his pain tonight and although he still whimpers when he coughs, it's better. Jason and I took over all NG cares. I want to be sure we know what we are doing before we hit the highway tomorrow.

Not gonna lie. I was having anxiety about going home. He's bolus feeds weren't going good, his pain wasn't under control and we live 200 miles away. Then Jess came and explained things to me and I began to feel better. Working 2 nights in a row when I get home isn't helping the anxiety though, but we'll get through it.

He got more playful as the night when on, and as jason and I were eating our sandwiches that we had made in the room...since we were about ready to go broke eating in the cafeteria...Chris tried to crawl through the crib to get to our bread. He couldn't eat it fast enough. Then cottage cheese. Then pudding. Then ice cream. THEN part of my ham sandwich!!! MY BABY WAS COMING BACK!! :)

We are good on the NG work, our babe is eating, part of our belongings are in the care and this momma is ready to go home to her big boys and her house that she has missed for a week.

Surgery Eve

The rest of the day went well. He's slept a lot today and I'm attributing it to the new seizure medicine. We haven't seen any seizures, so we will see if it helps, but we are just kind of hindering everything on Denver on June 6 in that category.

Dr. Goebel was by and said that the sleep study didn't necessarily show any obstruction periods, but he had some type of event 7 times a minute that would wake him up. She said it wasn't alarming, but enough to convince her that the tonsils and adenoids is still the way to go.

She said that instead of removing the tonsil from the wall of the throat, she is going to shave 80-90% off. This will reduce his risk of bleeding, less pain and hopefully not effect his swallow as much as the other would. She will do the same with the adenoids.

While she is in there she is going to scope him to look for a laryngeal cleft which could be causing the aspiration and would mean more surgery. She will also look for fistulas that could also be leading to the aspiration.

I'm not sure how long the procedure will last. She said that there is a chance he might need oxygen afterwards, but stated that she did not book an ICU bed because she is pretty sure he won't need it. Let's hope not.

The feeding issue persists, but the good thing is that Dr. Goebel, Dr. Thomas, Dr. Prestridge and I are all on the same page about the feeding tube. We are going to go with the NG until we know for sure that the tonsils and adenoids didn't help. That will be a repeat swallow and sleep study I'm sure. I know the repeat sleep study is for sure. Dr. Prestridge made sure to stop by tonight to right a note in his chart to tell them to not get in to a big toot about putting in a g-button. I checked, the note is there...it's a sticky on the front of the chart! JK!! :)

The sad part is the NG came out tonight as we were getting ready for his bath. I'm not sure what happened, but the tears I shed, didn't put it back in that's for sure. I bit the bullet though and put it back in. It went okay. Of COURSE he was tied down and crying, but he did well. My biggest concern was him not wanting me after it went in, but he snuggled up, until he saw Sarah (his favorite nurse) and he jumped in to her arms and let her carry him off!

He's resting now and we just wait until morning. Dr. Goebel said that we should be able to go home on Wednesday, but we will have to see. I know the tonsils come out tomorrow, but now we have to deal with the feeding issues.

He hasn't been taking oral foods very much since the NG went down...no surprise. They upped his rate to 50 ml/hr and it runs continuously...I'm sorry, but duh...the kids not going to eat if he keeps getting fed through the tube. So I hope when he goes home, we can run continuous during the night and then bolus during the day. We shall see.

Hopefully more of that will be figured out tomorrow or Wednesday.

The big boys had their last soccer game tonight. I guess Matt scored his first goal of the season and I was upset that I couldn't be there to see it! I didn't even get to talk to him because we were putting the tube back in at that time. I can't wait to have us all under one roof.

Monday - Day 6

Not much going on today. We are putting pieces of the puzzle together and making a game plan...hopefully for the future...aka DISCHARGE!! :) No dropping possible discharge dates yet.

We were up at 7 with residents coming in, and are ready for a nap by 9:30 this a.m. When he went to sleep, his breathing was bad and it continues. Lots of retractions and stomach muscles helping him breath. This has been the worst episode since last Tuesday. His sats miraculously were 100% which the nurse and I thought was a miracle due to the fact that he was struggling so hard to breath.

His feedings continue, but hasn't had much of an appetite, but who would when you get continuous feedings. Dr. Thomas said this morning that we have to figure out the feeding and that hopefully once we get the reflux test back we will know if we can change to bolus or not.

Possible PT visit today so we don't have to come back next week!

Waiting for Dr. Goebel, but surgery is at 7 in the morning tomorrow. Gonna nap now because not sure I will sleep much tonight. Will update more later.

Quiet Day

We had a very rough night last night. He would no more get to sleep, and one of the wires for his sleep study wouldn't be right and they would have to put them back. It was frequent and then we'd have to get him to sleep again.

Lucky for us, one of our favorite nurses, Sarah, was on and he would snuggle up to her when mom couldn't take holding him down anymore. When she came on last night he lit up! It was cute. Our nurse tonight is Megan who was my preceptor in nursing school.

They unhooked him at 4:30 this a.m. and he just fussed so Mom crawled in bed with him and he rested awhile.

The boys were here early this a.m. and unfortunately had to go back with my mom and Dad for school tomorrow. It was very hard to say good bye, not only to the boys, but to Mom, Dad, Michelle and Luke. Jason is here, which helps.

The rest of the day was just play time and nap time, especially for Me! :) I got out for a little bit in the mean time and they decided to move us to the 6th floor and have a view. He pretty much sat in the window the whole time. We went on a stroller ride for like an hour and even went outside and he loved it.

Dr. Goebel was in and said that she couldn't get an OR time for Monday, so Surgery will be Tuesday a.m. at 7. She will scrape his tonsils and adenoids and then scope him to look for a laryngeal cleft which could be the cause of the aspirations.

His breathing is noisy right now again, and feels warm, so finding answers to tests tomorrow will be very beneficial.

Rough Go

It's been a rough night tonight and it's only 11 p.m.

Right before Chris woke up from his nap this afternoon I noticed his hands twitching and then when he woke up he was very fussy, which usually he wakes up and is a go getter. He had his pH probe removed and looked like an amazing baby! :)

They placed the NG around 5 and had a difficult time doing it because of swelling, they think, and had to put a bigger tube in than they wanted to. He finally got it placed and then had to put the restraints back on. He had about 20 min of freedom before where he took a bath and enjoyed being able to use his arms! :)

He is on 1/2 strength feeds 24 hours a day because they aren't sure of the refluxing yet. It hasn't bothered him and should the feeding tube have to continue, it sounds like it may change to bolus feeds if no reflux is present. My gut feels a g-button coming on.

Shortly after the NG placement we found out we were going to get our sleep study tonight and I could have jumped across the room and kissed the nurse. This is the test that Dr. Goebel has been wanting and she will be ecstatic when she gets back tomorrow and comes and talks to us.

The downside was hooking him up to the wires. For the most part he just sat there and whimpered, but when it came to laying down he just laid there and cried. He cried so hard that it moved the tegaderm that was holding some of his wires in place. I hate the way he looks right now. He has his NG, O2, some sensor in his nose, a probe on his cheek and he has bandages around his head again.

Tonight he also started running a temp. Not major, but we Tylenol'd him to prevent seizures. He just hasn't been himself all day. He will smile for pictures, but for the most part he's just not himself.

Tonight was hard and Jason and I cried at the side of his crib because he's hooked up to all this stuff and you can hold him and comfort him. The only parts I could touch were his nose, his hands and his feet. I completely understand when I hear about other moms of other children talk about not being able to hold their children. It sucks and mine is only over night...I can't imagine for days and weeks on end.

I shared with one of our favorite nurses, Sarah, tonight that I didn't feel like everything was kosher. She said she'd keep an eye on it and it could very well be my exhaustion. I've been back and forth with Jen as well and she is anxious to hear all the results.

My mom, dad, sister, brother in law and boys go home tomorrow adn I'm not looking forward to it. I haven't got much time with the boys since there has been so much going on with Chris. I can tell it is bothering Drew and when all is said and done, he and I will get to do something fun by ourselves.

Tomorrow should be a better laid out game plan and I am hanging on to the hope that we will be home Tuesday. I know we are where we need to be, but I still want to get home and I can guarentee you there will be a big slumber party when I can have all 3 boys under one roof.

NG Day

I'm sitting here watching the clock as Chris sleeps. His breathing sounds better than it has in a week, but still has an occasional apneic period. NOTHING like we were a week ago.

Around 4:45, the nurse will be in to pull out our pH probe and then we get to take a quick bath wire free. Shortly after, the NG will be placed for feedings. He has lost 2 pounds since we've been here

I'm very emotional and I feel like a moron...I'm looking at what some of these parents here are dealing with and I am crying over a tube to keep my child hydrated. But at the same time, it's not necessarily the tube I'm upset about, but it's confirmation that there is something wrong with my baby. And no mother wants there to be something wrong with their children. Before you could look at his cuteness and forget about his struggles.

At the same time...we have a team that is INTENT on finding answers. All the doctors we have encountered have been fabulous, minus the resident that I schooled on CP this a.m. and I don't know much about CP. :) But in my experience, you do not use the word "ALL" in the medical world because there is ALWAYS an exception. Basically, he told me that "all" CP kids have low muscle tone but are very rigid...hmmm...I just stated that the CP spectrum is so WIDE and that some CP kids can function normally. His comeback...not many...I was half asleep and didn't argue. :)

Monday is our day of answers...okay maybe not answers, but plan compilation day. It sounds like the EARLIEST we will be home is Tuesday. But no one has dropped the "d" word yet...discharge. I assume because there are still too many unknowns.

Chris is just not quiet himself today. Tired, fussy and not smily much at all. As he lays in bed, he just looks like a little rag doll...okay a big rag doll. He has the elbow restraints on and believe it or not, hasn't been fussy about them much at all. He just has trouble itching his nose and doing his sign language.

My parents, sister and her husband are in town and it was so refreshing to see them this a.m. They are people I'm used to seeing every day. When my Mom and Dad were walking in the room, Chris lit up for the first time today (1130 a.m.) and lept in to Grandma's arms.

He's not eating much today and it has me concerned that the tonsils are swelling more, but we shall see. Dr. Colombo confirmed this a.m. what we already knew...they're huge!

Wish us luck...the next time I update, we will have endured the NG placement.

Frustration, Frustration, Frustration.

Christopher did so awesome today with the overnight EEG, all the doctors rounding and visiting Gage to say good-bye. I felt bad for the kid though because he would no more get to nap and someone would wake him up. First to remove the EEG wires and second to put in the pH wire.

Our AWESOME ENT stopped by this a.m. before she boarded a plane to somewhere. Her plan continues to complain until she gets a sleep study. He's on a wait list. She said she will stop in Sunday to see us when she gets back.

They removed his EEG wires around 11 and so he was hooked up to it for about 20 hours. Dr. Nelson came in later and informed us that his EEG was normal. I freaked - in my head- WHAT!!! I mean I wanted to jump and celebrate, but at the same time, I was frustrated that it was saying that it was negative. He said since we had seen activity however, that he wasn't going to take him off the med, but switched him to a once a day one that doesnt have to have lab draws to regulate it. BONUS!

Jairren, my sister-in-law was with me and reassured me after Dr. Nelson left that it is not uncommon for EEGs to be normal in epileptics. I emailed a couple ladies through the Epilepsy Foundation I have met and asked them too. They both reiterated what Jairren said. The good part of it is that this gives us more hope for him growing out of them and that the apnea is not linked to a seizure. We will keep our appointment in Denver on June 6 with the epileptologist.

Then the pulmonologist that is on for the weekend came around and introduced himself. Was concerned again with the aspiration. Looked at my videos and then questioned what we were going to do about feeding him until we can get the possible cause figured out. It's refreshing that we are looking for a cause.

They are still talking g-button and whether he is refluxing too, so they are doing a test, that watches the pH in his esophagus to see if he's refluxing. We have to push a button for every little thing he does, so much so that i feel like I'm playing a video game. If you looked at pictures, it's the one that looks like a feeding tube, but it is indeed a test. He struggled with it at supper and eating and sounds kind of cruddy tonight.

The bad part about the pH test is that to keep him from pulling out the wires, he has to have elbow restraints. The funny part is watching him try to feed himself...i know horrible mom. He finally grabbed my hand so he could itch his nose and head. The pH wire stays in for 24 hours. :(

Jason and the big boys showed up around 6:30 and it was SO SO good to see them. Today was a frustrating day on all ends. It was Andrew's track and field day and I was mad I couldn't be there, but knew I was where I needed to be. Jason took videos and sent them to me and I cried with everyone.

When they arrived, Matthew went straight for me. Chris and I had hopped in the stroller and went for a walk and sat by the fountain/stream and watched the water. He eventually maneuvered himself to get his toes in it. Not sure we were supposed to, but like I told Jason...at least he didn't pee in it.

The big boys and I went out for supper at our favorite establishment...Jack and Mary's. Andrew ate and talked...surprise surprise...and Matt ate and snuggled...pretty much his norm. Matt wanted to come back to the hospital and sleep with me. I then took them to Cindy's for the night, which I'm worried will be hard on Matt because he just got here...but Jason is out there.

When I got back to the hospital, I heard a baby screaming, when I went in to the room, Jason and Chris were missing. I listened a little bit closer and sure enough, those were my baby's screams! His IV went bad and they were trying to restart it. It was a horrible feeling knowing that he was going through this and I wasn't there. I promised not to leave for that long again. Jason did good though. Even though he denied it, I could tell it bothered him.

After 4 sticks they couldn't get it and Tina (one of my favorites - her son has epilepsy, hypotonia and dysphagia...sound familiar?) called the physician who said to leave it out, but stated the inevitable...NG.

So that's where we are at...It sounds like after the pH test is done, the NG will be placed for feedings. I guess we have to...Jen has always said it will be her job to get him off of it.

Tonight he was up until after 11 bouncing back and forth from Jason and I, loving each one of us. He even showed his love by biting me - now I have a huge bruise and welt. Obviously he is sick of helping hold him down.

Mom, Dad, Michelle, Luke and Lily are coming down tomorrow and I can't wait. Yesterday, I would have given anything for my Mom to be here so I am looking forward to them. Jason's family has been popping in and out and I am very greatful, but nothing is better than having your own family and I'm dying for sister time.

The circles and few answers continue. I just finished talking with our nurse and it sounds like we will have a sleep study this weekend and then surgery Monday, and possible home Tuesday. It will all depend on what they figure out...We'll get there.

Got a Lot Done Today

Our day started off at 8 a.m. with an appointment with Dr. Thomas, pulmonologist who does great work with aspiration. After that I remember thinking that it had to be about 4 p.m. and when I looked at the clock and it was 1:50. Ugh!

Dr. Thomas looked at his previous xrays and ordered new ones after getting a history on Chris. She came back with word that his tonsils and adenoids were HUGE! I have since looked at the xray and can not confirm or deny this...basically because I don't know what I'm looking at. His nurse Sara and I just made some guesses! :) Anyway, she also ordered a swallow study, which increased my anxiety and watched my videos that I have been recording of Chris breathing. (Once I get to the car to get my cord for my camcorder, I hope to download one.)


By just watching the video she looked at me and said...you came prepared to stay right? I said yes...so she said that the plan was to then admit him for further tests and observation, but in the meantime Dr. Goebel (ENT - the main reason we came down) was gonna sneak in and see him.

Now, I know the Lord works in mysterious ways and he did this morning by gracing Chris with his nap shortly before Dr. Goebel came in and quickly made him sound like his worst...Thank you Jesus! After introducing herself, she goes..."I don't have to ask why you're here." Then she said she had heard lots about Chris and I...I'm hoping it's all good. :)


We chatted, she looked him over, and then she stated again that the adenoids and tonsils are HUGE. The funny part about all the doctors saying his tonsils are HUGE...is that his eyes get really big when they say it too! :)

The plan was made to take them out, but because of his extensive history, she wanted a sleep study first, but wasn't sure if she could get the sleep study, since they are booked out until July, but stated she was going to whine and cry enough to get it. :) As I walked out of the clinic to have Chris admitted, I asked if it was just over night or what the plan was and the nurse goes...no hun, I think you're here until the tonsils and adenoids come out...which at this time...is Monday.

We had our swallow study this afternoon and much to my dismay, we failed. He again is aspirating the honey thick liquids and cheetos. I think that took more out of me than the whole being hospitalized until Monday. We have gone backwards. I still want to argue with the lady though that did the test, because what she was calling aspiration, I was calling penetration, but again, I am not a radiologist.

I spoke with Jen about it and will get her a copy so I can get her opinion. But for now they took away his liquids and put him on an IV for fluids.

The Resident (Dr. Singh) that admitted us was very nice. I liked him very much. He was very willing to listen to my concerns and what I wanted and how to do things. We just had trouble with 2 things...not being able to read a crystal ball and the feeding tube issue.

I kept asking questions about what was going to happen and when it was going to happen and how it was going to happen and most of the time he said...I'm not sure. I reassured him that I am just very impatient and appreciated all he had to offer!

The feeding tube issue...wasn't backing down on that one. I told him that I did not feel that an NG was the way to go and did not feel comfortable without talking to Dr. Prestridge. I said he can either have pudding thick liquids or and IV...no tube at this point because he wasn't going to keep it in. His response...Let me go talk to Dr. Wilson.

When he came back in...Bless his Soul...he said that he was cool with an IV and that he would address the swallowing issue with Dr. Prestridge tomorrow....GREAT ANSWER. Pretty sure he walked out of the room though thinking I was a major rip! :) My dad was proud of me! :) He has been very against a feeding tube since the get go.

Now, don't get me wrong, last week we thought that was the only thing we had left until we discovered these ginormous tonsils that have surfaced and it sounds like everyone is hoping that taking them out will help alleviate the issues. Lord, I hope so!!!

This evening was good. Had a bit of company, then rested and snuggled awhile. Grandma K brought him a Curious George stuffed animal and we are lovin that.

Around 9 they came in to put his monitor on that is monitoring his respirations, heart rate and oxygen saturations. This will also tell if he is having periods of apnea. He's had a couple priods of apnea and has had once incident where he bradied down in to the 80s. He's wrapped up in wires and my hope is they just don't get undone. THe one good thing is that his sats have remained good through all of this.

I stepped out of the room for a few minute tonight to visit with some friends form back home that are just down the hall from us. It was good visiting with them and then their nurse is an O'Neill-ite as well. I also ran in to the nurse that I precepted under when I was in nursing school and it was great to get caught up with her.

The big boys are doing well. They have soccer tomorrow night and then Drew has his track meet on Friday. Jason is home and staying with them although he would kill to be down here with us. We gave the big boys the option of coming down Friday after the track meet or coming down Saturday after soccer. Jason and I was sure they would say Friday, but much to our surprise...after soccer!! :) Which is fine...they need some normalcy. Jason saved our house from a fire tonight by cleaning out the lent trap and hose that was 50% full of lent! Good heavens! That's the last thing we need.

Best get some sleep. Tomorrow is looking to be another long day with our neuro consult and more tests.

If it's Not One Thing It's Another

We had a very eventful weekend. It started Friday when I had just gotten Chris to sleep and laid him down to change his pants because I noticed he had just filled them again. I also noticed that he was retracting significantly...which is a sign of difficulty breathing. His lungs sounded good for once and he wasn't running a fever so I was baffled. I recorded it on my phone and texted it to a couple different people and Dr. L and asked if this was of great concern...well duh. But I wanted to just get through the night and we did.

I expected though to be going to the doctor the next day and for him to sound like crud, but he didn't ironically enough. We had 3 seizures on Saturday, but other than that, a great day. One he went to bed though...you got it...bad breathing again. He did okay through the night though.

Sunday, we were very fussy. He slept most of the day, being awake only 7 hours throughout the day. He also had 4 seizures, including 3 last night in 2 hours to end up in a 45 post ictal state. I took a photo of him in that state and it didn't even look like him. It looked as if he was only a shell. The glimmer in his eyes was gone and his little smile that is always on his face was gone. He was just staring blankly. A couple friends agreed it looked like he wasn't "home" either.

Once the post ictal state was up, the breathing issue started again, but his time with periods of apnea. Again though...this morning, he was up and fine. I took him to see Dr. L though today to get on the top of this. His lungs still sounded clear, but he was still having issues. He looked at his tonsils and said they were touching his uvula and was surprised that he could swallow anything. So basically, when he's sleeping they are shutting off his airway.

We are on another antibiotic...5th one in 10 weeks. We are still waiting to hear form Omaha as to whether or not a feeding tube will be placed. Last night he was in the bath tub and was splashing and giggling so much that he swallowed the water and of course...aspirated. Jen had always said that parents had complained of them having issues in the tub and I was like...whatever...but we found out first hand.

He's fine today as far as lungs go....but the viscious cycle continues. We just needs answers...and hopefully soon.

What a week!

I blinked and we are on Thursday! Where did the week go. I counted tonight and Andrew has 11 days of school left and 4 of them he gets out early and one is his track day! I always loved the spring semester of high school...pretty sure the teachers didn't, but when you could count 30 days of school in an 8 week period...AWESOME!

Anywho...The Chris front moves on...well, not sure about moving on, status quo seems to be my normal report. We have had some good news. His first round of genetic testing, which included the microarray and fragile X, came back NEGATIVE!!! At first I was frustrated because that told us something, but yet I felt like it didn't. Then when talking to Doc P, he reminded me that eventhough, it doesn't tell us what is going on, it's still a positive, because it means he doesn't have a syndrome. So I am basking in those results right now as that has been our only positive news since January.

We also got the clear to have our second round of genetic testing that includes the test for Sotos Syndrome. Dr. Isburg and Dr. Prestridge have both questioned this syndrome and he hits a lot of the symptoms, minus the mental retardation and cognitive impairment. I'm okay with that! The test takes 4-6 weeks and hopefully we will have an answer then.

We visited with Dr. Prestridge again on Monday and the "t" word was dropped again. She said at this time it looks like he will need to have a g-button placed (feeding tube) to help with the symptoms we've been having. She stated that he would still be able to eat table food, but all liquids and liquid meds would be through his tube. She suggested an upper GI to look at the anatomy before tube placement. It was ok and showed no signs of reflux which is what Dr. Prestridge was wondering about.

Then we consulted with Dr. Murphy, our favorite allergy and asthma guy, but this time we saw him for pulmonology. He said that although the changes that he saw in Chris' chest x-rays were slight, they were enough to warrant a g-button for liquids. His thought was that we may be amazed at how healthy Chris would be if he wasn't aspirating at this time.

It made a difference too I think, when I talked to him and was telling him that we had been on antibiotics since the middle of March. The longest we had been without an antibiotic was 6 days and had just finished another one since see Dr. Prestridge 2 weeks ago. He was going to talk to Dr. Prestridge and we are going to go from there. Other good news I guess was that he doesn't think there is an allergy relation. About time I don't have an allergy kid! Although, I'd sure take it vs epilepsy.

I haven't talked to Dr. Prestridge to get the for sure, for sure, but that call will be made today. I've been struggling with it. I've talked to Jen at length and Jess and am just battling it back and forth. The mom in me doesn't want it and has anxiety about taking his milk and sippy cup away from him and just typing it brings tears to my eyes. But the nurse in me, knows that it is best for him.

Today I need to call on Dr. Presetridge's office and find the plan.

We also have our date set for Denver which is June 6. I have lots questions. I talked with a nurse today and although she couldn't answer some of my questions she put me at ease with others. He still continues with the absence seizures a couple of times of day and will have a big seizure (aka grand mal) if he spikes a temp.

That is yet another reason that has us addressing the feeding tube. We are aspirating enough that is making us get recurrent infections, which then causes us to run a temp, which then leads us to a seizure. I can't confirm it, and especially after talking to Jess, I think the seizures are causing or are linking to the lung issues we've been having. Jess questioned if his seizure meds are making him just sleepy enough to make his swallow ineffective. We may never know.

I just feel like we are in this viscious cycle that doesn't have an end in sight. We'll get through it though. It's not slowing him down and he takes his lab draws like a champ.

What Day Is It?

I was walking over to a funeral dinner this morning with one of my co-workers and we were talking and I looked at him and said...what day are we on? That's what I feel like...that I'm just brain dead!

Yesterday was a busy day for Mr. Christopher. We had heard on Friday that we had been approved for our genetic testing and I was excited. I felt like a dork because when the lady told us it had been ok'd, I started crying. We've been wating since DECEMBER!!! We had the lab drawn and he had a skeletal survey which was over 20 xrays of him form his head to toe. This will look to see if his bones are aging faster than normal or not.

On Friday, I also spoke with the Nebraska epilepsy foundation and ironically enough, the wonderful person I spoke to is an O'Neill native. We talked about what I see Chris do and what we are doing with his meds and what we haven't done and the things that could happen and resources to look in to. It was an overwhelming conversation. There was so much information and most of it confirmed what I have been thinking. Their suggestion was to see a specialist...one called an epileptologist.

We had PT yesterday and Stacey was pleased with his movements forward, but stated that we won't see huge changes until our seizures under control. Since I am seeing 3-4 every day, which usually means there are more you don't see, I have no hope for that to happen soon. She could feel my frustration and agreed that the specialist sounds like a good idea. She was happy with the little improvements he has made.

We saw Dr. Prestridge and she was concerned by our aspiration coming back and our stools and doesn't understand why. Jen (speech therapist) and I had been talking about placing a feeding tube to help him get over the sick humps which we are learning we have severe troubles with. She is still very reluctant to put a button in him and I am happy about that, but it's still frustrating that his lungs will not clear up. She agreed that his lungs sounded horrible. She requested that we go back to Dr. Murphy, the pulmonologist and he will have the final say. he will be able to tell us if it is a concern or not.

So the plan is now to head back to Omaha in a couple weeks for our pulmonology appointment. Then call later this week to make an appointment with the specialist.

Another Scare

This world of epilepsy is relatively new to us and the thing that has been driving me nuts for the past few weeks is that no one has taken the time to explain to me what to expect or not to expect; when to worry and when not to worry; more importantly, when to rush to the ED and when not to.

Tonight we were at my sister-in-laws wedding waiting for supper when I noticed that suddenly Chris was warm. It wasn't 20 min later and he was seizing while sitting on my lap. It was terrifying feeling the whole thing. I know I'm a nurse but we don't deal much with seizures. So I had Jason run and get his sister, Jess (not the bride), to help me assess him (and moreso me!). In the mean time, Jeff and Jason witnessed another one and then he had yet another seizure where he zoned out.

We scarfed our food and then high-tailed it to the nearest Walgreens but before we could get there he had another one. I texted one of our Docs back in O'Neill and he said to take him in. Believe it or not...we got right in. This trip to Children's ER did not entail a 3 hour wait in the waiting area and me in tears! :)

They took us straight back and had him assessed and on our way to being treated. His blood pressure was through the roof, his temp was 103.4 via his ear and he was still postictal (unconcious state post a seizure). He was so lethargic and completely out of it.

A resident came in and was worried about the temp of unknown origin and that we should straight cath him (catherize him to get a urine sample) and if that was negative, we would do blood cultures. I was a little like...WHOA!!! He said his lungs sounded clear although I could feel his chest rattle and I was pretty sure he aspirated this afternoon.

THey gave him a dose of motrin and we waited and waited and waited. About 90 min in to our visit or 2 hours post initial seizure - he came alive!! He was up and down and around and messing with the bed and all giggly. Then we felt retarded for going to the ED, but his temp was still 101.2.

FINALLY the Doctor came in and she was amazing. She answered our questions about seizures and how things that are abnormal to most kids are somewhat expected or "normal" for epileptics. She gave us things to watch for and how to treat and suggestions. She also gave us the option to do lab and CXR or go home and sit on him.

By this time he had a snack and downed 1 1/2 cups of water and was flirting with the doctor. We chose to bring him back to Curt and Cindy's since she had given us the information we had been looking for. She also stated with my background that she was comfortable sending us home.

Since our visit he's been very restless and the fever is creeping back. I worry about the fever as this is our 2nd fever in less than 2 weeks and we aren't real sure as to where it's coming from although with his cough, I'm curious as to whether his lungs will start to sound crappy again.

Of course I had to tell Jen of the possible aspiration and her thought was that he may have aspirated because of a seizure which throws us in to another whole new ballpark.

I still feel like we are wandering aimlessly on this journey of trying to give our son the best care possible. I had heard about the epilepsy clinic at UNMC and it's rave reviews, but unfortunately they turned us down due to his age.

Our journey is beginning yet again. The best thing out of tonight was that Jason was with me. That helped the stress level in and of itself.

Mass

I remember in high school having the Archbishop come to school and say Mass for something. It was shortly after the church allowed girls to be on the alter as servers. My job was to hold head dressing he wears. Of COURSE my Grandma and Grandpa Shoemaker were there and after Mass was over, Grandpa came over to me and was crying because he was SO proud! All this time later I can still see his face and chuckle about it.

Andrew had his second Mass today and Grandma and Papa Shoe came. Andrew was the proudest candle carrier ever I think! The day went on and nothing was said until Papa Shoe called to tell Andrew tonight how proud of Drew he was.

I just had to smile. Not only is a great-Papa Shoe crying somewhere. But Papa Shoe was pretty proud too! Can we say like father like son?

Here Puppy Puppy.

The other morning I was playing catch with Matthew and I was being mean by throwing it over his head. After doing this about 3 times he looked at me and goes..."Mom, I'm not a dog!!" Can't get one past him!

Epilepsy

I haven't written for weeks now because it is has been lots of processing. A few days after we were told that Chris had seizures and that we were to start him on meds, we returned to Yankton to have Matt eval'd for the same. He had an EEG done and I'm excited to report that it was normal. I'm pretty sure Mariclaire could hear me screaming from excitement at the elementary school!! The same day we were up for Matt's testing I spoke with Dr. Isburg about Chris. He stated that he was having moderate activity and his were generalized absence seizures. His carbatrol level would be checked in a couple of weeks nd then we would go from there. Then I posed lots of questions, how do we know he's having them, what do we do if he has one that is evident, will he grow out of it, will it get worse, will it effect him cognitively. I also asked if he was calling it Epilepsy and he said yes, but I have since learned that seizure activity and epilepsy can somewhat be interchangeable. The only thing he answered was that it is too early to tell if it will get worse or better and as far as cognitive, only time will tell. This last week was very rough. Chris was sick and while he was running fevers he had some seizures where he was tremoring with him and his eyes were rolled in the back of his head. Then one night I woke up to him with a mouth full of blood and a cut on his lip and one on the inside of his mouth. Not sure as to whether that was a seizure or him running into the side of the crib, but it was scary no matter which one it was. Since he's gotten better, they have seemed to go back to what they were before and in speaking with one of our physicians in town he questioned as to whether his threshold would be lessened since he already has seizures. That is on my list to talk to Dr. Isburg about this week as I have to find out if we need to tweek meds or not. On the 14th of March we visited with genetics and they looked him over high and low. Dr. Olney, the geneticist said he was too cute to have something wrong and I completely agree, unfortunately, something is off. After looking him over head to toe and taking pictures of him from head-to-toe the plan was made to do a few tests on him that would include a microarray which would see if he had extra genes or was missing something. They would also test for Fragile X, which I'm sure he doesn't have and Sotos syndrome. The category they are looking in is kind of like the gigantism category. They will also do a scan of his bones to check for his bone age to see if his bones are aging faster than they should. We don't know when we will do the genetic testing as they approve it through our insurance company before they do the testing. His swallowing is doing okay. When he was sick we had lots of aspiration problems and that is about the only time I wish I had the feeding tube option because he can't swallow effectively. We are looking at starting therapy this summer, however, with the epilepsy diagnosis on board we are not sure as to whether or not it is a possibility. He's cruising around everything and does descent walking holding someone's fingers but he really struggles with keeping his core engaged and therefore wobbles. I bought him new shoes the other day and he wanted NOTHING to do with them. He would stand, wouldn't move, he just sat there and cried. It was pretty darn cute. So, we have returned to status quo after our last illness and continue to get over the cough, but those can last for weeks. We head back to Omaha in a few weeks for a visit with PT and to see Dr. Prestridge.

Sock to the gut

I know I have shared this with a few of you, but wanted to get it written down not only for my own therapy, but for family and friends far and wide. It's also taken a 48 hour processing period with lots of emotional ups and downs.

Almost 2 weeks ago, I took Christopher to Yankton to see a neurologist, accompanied by a good friend. Due to the collapsing and what the PT thought of stares and pauses, Doc decided it be best to rule out seizures.

We met Dr. Isborg and he is a very kind and gentle with Chris. He looked him over and then ordered and EEG. He was asking if either one of the boys had any problems and I explained that Matthew has had leg issues, but as far as staring off in to space I wouldn't notice because Matthew is SO slow! I would think it was just him.

We left and went and did the EEG and Chris did awesome considering all they had to tie on to him and then he had to sit there. He passed out and then we had to wake him up the poor punkin. Halfway home, I looked at my friend and asked if we had learned anything that day and she said...no Jen! I was overly exhausted that day and was afraid I missed something!

A week went by with no results and I didn't worry about it. No cause for concern and Dr. Isborg, didn't seem too concerned. In preparation for genetics however, I decided that I had best find out the results so I could say...yes, we did and EEG and it said... Doc hunted down the results, but I hadn't heard from him.

After waiting 30 min on the phone on Thursday trying to get to Dr. Isborg, I was told he was off and he would call on Friday. To avoid it being missed I called Dr. Isborg.

Dr. Isborg didn't waste any time...the EEG did indeed show epileptic activity...is how he put it. I don't remember much after that. I didn't ask any questions. I just froze and tried to hold back my tears. He explained that he was putting him on meds and that he wanted to see him in the next couple of weeks for further work up. He also stated that he wanted to see Matt to be on the safe side.

He went on to say that he wouldn't be surprised if they find Sotos Syndrome. However, if it wasn't that, he was pretty sure they would find some type of syndrome. And that I could google Sotos Syndrome if I wanted.

I did...in the truck, on the way home from Omaha, on my little phone, through my tears...I read about Sotos. I'm not completely convinced that is what it is because he only has a couple of the symptoms and those same symptoms can be other syndromes too! Some of them will forecast his future.

I have just been kind of numb. Jason and I look at our pleasant, happy, content, healthy looking baby boy and my heart breaks to know that things are just unfolding. I know it's nothing we can't get through and deal with, but it feels like the wind has been knocked out of me.

We have lots of unanswered questions and still need lots of answers, but we continue to write down our questions and wait for our next appointment with Dr. Isborg in the next couple of weeks.

Jen, Chris' speech therapist called Friday night after I texted her and was beside herself. She was afraid she missed something, but I assured her she hadn't, because that would mean that I missed something. I told her that the frustrating part for me was that we were doing so well!

We have genetics tomorrow and I am taking a voice recorder and a notepad so I don't miss a thing. At this point, so much is up in the air as we only have pieces.

Andrew

Andrew has been on the ball today. I think it is because I am leaving for appointments with Chris.

This morning I was folding clothes and as I was folding them, Chris was unfolding. I looked at Chris and said...child, I'm gonna send you to Egypt.

Jason then pointed out that probably wasn't a good part of the world so I changed it to China.

Andrew's comment was: "Tell them thank you for making my shoes! What? They said made in China!"

He's been on the ball since. We did however instruct him on the importance of when to say stuff and when not to. The bad part is, his funniest moment today was during this conversation,b ut for the life of me can't remember his exact words!!!

I guess he's showing his side of the Shoemaker wit! However, I feel lots of comments being made in parent-teacher conferences in the future! :)

First Mass

This morning was Andrew's first Mass- where he had a job. We have been practicing his reading all week. It had the word, inheritance, in it and caused a challenge for us at first, but somewhere along the way he was able to spit it out. It could have been the constant quizzing I was doing...How do you say that word? But he spit it out with no problem.

The other day I wrote about how his Great-Grandpa Shoe would probably be tearing up if he could have been there. Like I fool, I teared up as he read it without any problem. When did my little man get so big?

MC & Bob were there which made for anoter surreal moment. My first Mass where I could do something was with MC and now MC and I were watching Drew. At one point she leaned over to me and said...Do you remember what you did at your first Mass? My reply was...No...that was 23 years ago! She said that she would go home and look because she was sure she probably still had her lesson plans!

Learning How to Tie Shoes

I forgot to share this. We are starting to teach Matthew how to tie shoes and Jason is so good at this. He is so patient and he has his little thing he does to help them...Loop swoop and pull.

However, tonight at Bob and MC's, she was saying how he has to learn how to tie his shoes and I said that Dad was starting to help him. With confidence Matt shares...yep, loop, swoop and poop.

I'm surprised that MC didn't drop Chris she was laughing so hard! I was rolling too! Too funny!

For the record...we did correct him.

Leg Issues

With a few days off, I have been trying to work with Mr. Chris in the whole walking category. He will be 14 months on Sunday so I'm trying to help it along. He hasn't wanted to stand much lately and I'm not sure as to why. He's been very sleepy, sleeping for 4-6 hours during the day and then 10-12 hours at night. Not sure why...maybe he's getting ready to grow.

The thing I have noticed when trying to walk with him is that he is dragging his left leg. He uses his left leg to pull himself from sitting to standing, but when he's taking steps now it is lagging behind. It's almost how some kiddos go up stairs, but this is across the floor. He takes about 10 steps and then falls. The other weird part is that he walks in a diagonal to the right. That parts kind of funny! We see PT on Monday so I will be anxious to see what she says.

I'm not sure why this is. Both issues are frustrating me. We are doing good on the food and drinks. We must have aspirated tonight however because he was wheezing and had stridor after he fell asleep tonight. He was running a temp yesterday in the Chiro office and is having a couple eczema breakouts, so I'm almost expecting something to come up.

Dr. K had said that when eczema exacerbation happens, it usually means there is some type of infection going on. It has held true for the bigger boys.

Other than that, our separation anxiety has set in! He also just like Matt. He likes to be up and see what I am doing whether I'm cleaning, doing laundry or cooking. He's fascinated with the iPad!

Our genetics is coming up in 4 weeks. My heart skips beats just thinking about it. I was telling a couple of my co-workers today that in researching his issues the spectrum is so wide...from shortened life span to lots of PT needed. It's hard to not think of the worse, although I'm pretty sure that is not this case.

The big boys have been out and enjoying the nice weather. Andrew is preparing for his first Mass this week at school! He gets to read..."ya know that part where ya speak, then ya sing, then ya speak, then ya sing." (his defination...aka the responsorial psalm.) He's pretty pumped not only will he have one heck of a crowd at Mass cheering him on, but he has 2 Great-Grandparents in heaven that will be grinning from ear to ear! If Great-Grandpa Shoe was still here to be at Mass, I'm sure he'd be crying. He always did that when I was in high school and had what he thought as an important job at Mass!

Matt has really grown up these last couple weeks it seems. He's still in a race to see who's slower...he or molasses, but he's doing things around the house, that he hasn't done before. Again...all in his own way and time. He's so funny. He's having leg issues tonight as well. He just doesn't have great strength in his legs since he couldn't be outside for winter. With all the nice weather he's been out so it makes his joints sore. He's a trooper!

Oh Matt!

I have decided that Matthew is going to be a stand up comedian.

This morning I get home from work and he shares this story: Last night after they play basketball these girls in pink shirts came out and danced and they...like...blew my head off. (ME) How did they blow your head off? (Matt) By dancing! They just blew my head off!!!

Obviously the girls had an awesome dance.

Then later in the morning, Chris' thickeners show up and he decides he's going to help bring them in the house. He puts on his shoes, t-shirt and his coat...note I did not say pants! So he goes out and after like a min, Jason goes to find him and he finds him at the end of the driveway helping the garbage man! Jason asked him a question and and his response was: They didn't even throw me away!

Oh my child....you are too funny!

Long few days...

I apologize for my last post. I didn't mean for it to turn out like it did. Just had boat loads of anxiety going in to this week and to be honest, not much improvement expected until after genetics. But thank you for all the kind words and prayers.

Anywho, little man had a swallow study on Monday after making a quick stop to see Trent and Tiff for another adjustment and some cranial/sacral.

Jen walked in, as her nomal cheery self and took one look at me and said...what's wrong mom? Explained I was just trying to keep my heart from pounding out of my chest. I was really nervous, Chris took it like an old pro! He just sat there and let Jen hand him things and he ate and drank them accordingly. It greatly helped that he was familiar with Jen and I could sit back and try to understand what was going on, on the screen.

In November, if you remember, he aspirated EVERYTHING. Solids, liquids, whatever...everything. After all the therapy and altering things here, Monday showed SIGNIFICANT improvement, accroding to the radiologist. Jen reassured me this morning during therapy, that before he was aspirating everything and now, all he is aspirating is the nectar thick liquids and the thin. He has less residual in his mouth and on his tongue and isn't pocketing things like he was before. He is handling his boluses better and is taking from a sippy quite nicely. Huge, HUGE change from November!!!

Jen was excited, I however, was still skeptical. The part I struggle with is the why? What is going on, that is causing this problem. I'm not sure if I was relieved that the study was better or worried about the unknown, but in the middle of the main lobby, I broke down crying like a baby. Jen reassured me that she feels he is more stable now that he ever has been. We made plans to talk at therapy this a.m.

Therapy was bittersweet today. Chris was exhausted and didn't want to do it and we didn't get to the numbers we normally do. Meanwhile, Jen and I discussed, continuing vs putting therapy on hold. She again reassured me that because of the swallow study she is confident he will do fine until I decide to start up again. She pointed out that we are learning his triggers...i.e. ear infection, sinus congestion, drinking Matt's 7 up...and therefore know how to prevent or treat to help his swallowing. Because of this, the plan was made to put therapy on hold till this summer.

My other question I had was when he was aspirating the honey thick liquids we still went with it and now we are tolerating ok. Why couldn't we do this with the nectar. She said that his boluses with the nectar were too large and she wasn't comfortable with them enough to send me home and do it on my own. This means, when we start therapy again this summer, we will introduce nectar thick liquids. Exciting stuff let me tell you.

The other part of the bittersweet moment at therapy, was saying good-bye to a good friend. Yes, we will text back and forth, but Jen has become a warrior for me and a person who helps me think through things and makes me confident in my choices for him, whether they be foods or doctors, not to mention, trully cares for Chris. I don't know if I have mentioned it before, but Jen's daughter has some neurological issues, so in a way, we could relate. Not to mention she's a Dr. Kronberg fan, who has now been dubbed K-dog. In December, I knew we wouldn't be gone for long, so it wasn't as big of a deal, but this time, my stomach is telling me different.

Saying good-bye was hard and Jen and I cried as we walked out, but it wasn't for our worries of Chris for once, but of putting a friendship on hold.

We also got to see Dr. Prestridge today and I'm always very impressed by her. I like her A LOT! Besides being very surprised...moreso startled by how much milk Chris drinks...she was very happy with the progress we are making! We have to go back and see her monthly, give or take a week, but all she could do was smile at him! Then again, he is pretty darn cute! ;)

So we are home. Our trips to Omaha are not over, I think I am still down there every other week for doctor appointments for Chris and possibly just a day or two, so FAR better than every week for 3 days. Part of me is not completely convinced we will make it to summer, but it's a good goal to set.

It will be good to have all 5 of us home this weekend and me not have to work. We need time together. I took Matt with me this week and he was so funny. He needed new shoes so we had to try on every pair in a 1 or 1.5 and then take a lap around the store to see which one he was the fastest in. Why do I need a daughter when I have a shopper in Matt. He loves to window gaze. Plus he informed me that when he grew up, he was going to be a singer and buy a house!

It was good for Andrew to have one-on-one time too. Michelle stated that he was beaming last night to just have things on his own!

I know I will be excited about the findings from this week. I'm pretty sure I just have to get past the exhaustion. Thanks again for all the prayers. We are getting there...

New Year

Wow! I didn't realize that I hadn't written since the first of the year and so much has happened.

We finished with therapy the last week of December and had plans to take January off. Two weeks later, I had Jason take Chris to the doctor to have his ears checked because he hadn't been acting right and was draining green goo out of his ear. Doc said that his lungs were sounding bad, so we xray'd his lungs and low and behold, and infiltrate - - or pneumonia. My heart sunk! This is what we had been working against the whole time. He gave us 2 options, #1 therapy again or #2 let Dr. Prestridge and Dr. Murphy know which could possibly lead to a feeding tube. If you have to ask...we started therapy again.

We did a week of therapy and Jen and I thought back and forth as to what could have happened and what could have led to it. After all our thinking...we realized we weren't exactly sure what it was. In the meantime, Jason's Grandmother passed away and so we missed a couple and then went again.

He had a rough 3 days. He was coughing and choking and aspirating and at the end of the day, he sounded horrible and would have stridor and all I could do was sit there and hold him. Dr. Murphy had fortunately told me that with him aspirating, it would cause his larnynx to spasm and cause the stridor. He said that as long as it went away it was okay and to be expected with how much he was aspirating.

I felt like we were going backwards and fast. I hadn't changed anything and kept a very close eye on everything that went in his mouth. Jen reassured me that he had made huge changes, and after reading my last post, I am reminded that we are further than I tought. We visited Dr. K while we were in Omaha and come to find out Chris had a plugged ear tube which caused an ear infection which causes thicker secretions which makes him unable to swallow effectively. Like that chain? My anxiety dropped significantly after seeing Dr. K because had their not been an ear infection, there was going to be a "Come to Jesus" talk. An ear infection was the only thing that Jen and I hadn't thought of that could be causing the issues.

Since then we have continued therapy and then this coming week we will do a swallow study and visit with Dr. Prestridge. I am so nervous I could puke. So much is riding on this study.

In the mean time, we started PT in Omaha and the PT that began working with us, gave us excercises to do with him and things to change for him and it seemed liked we made leaps and bounds. Bounds so big to the point that Chris even took a few steps across the living room behind his push toy. Jason was home so we could both enjoy the excitement and I am not gonna lie...I was in tears! Jason thought I was a nerd, but they didn't know when this would happen. Unfortunately since then, we have only done it once or twice.

I also took him to visit my cousin who is a chiropractor. He adjusted him and his wife did some cranial/sacral on him, which I'm still not sure what it is, but I'm open for anything. The first time Trent adjusted him the day after was horrible. We couldn't put him down and he still fussed and that night he didn't sleep. Tiff had told me to let them know if he remained fussy so I made a 911 call to them and took him back in on a Saturday...Praise Jesus for awesome people and a small town!! :) Trent thought that he had stimulation overload as his spine was so restricted and tight. He adjusted him again and we came home and he took a 3.5 hour nap and woke up as my happy baby again. Since then, we have reached over our head, which we have never done. I jokingly told Tiff the other day that I had thought about taking him back and ask to put him back as my house was baby proofed as far as he could reach! Now, I need to reassess! ;) The other thing that Trent suggested was to have me cut back on his milk intake as milk increases the thickness of secretions...after that, I thought....DUH!

Our aspirating and stridor continues. I'm not sure why, but as we carried him in to the clinic the other day, Doc gave me a sideways glance as he heard him breath and I said...I know he sounds like crap, but I'm getting used to it. I lied. His ears were good and lungs sounded okay though.

I'm not gonna lie, as genetics in March gets closer, I get more nervous and scared. The aspirating continues and there are times when he's sleeping that he sounds so horrible, that I'm afraid to check on him in the morning because I'm afraid of what I'll find. After the one walking incident, he hasn't walked much more. He continues to pull himself to his feet and takes a few steps around things, but then will sit down. He doesn't want to stand on his legs regularly. He's also sleeping more. He will take 2 naps a day usually totaling between 4 and 6 hours and then be ready for bed at 8:30 and sleep until 7 or 8.

I just feel like there is nothing we can do until genetics. We just sit and wait and watch him struggle at times. His awesome attitude continues. He's so happy and content.

As for the big boys...they are struggling. Not only is their Dad gone continuously every 10 days, but Mom is coming and going. They are seeking attention, and Mom is trying her best to give it to them. We will get through it and am looking forward to summer when I can load them up and take them with me!!