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!!

One to Go

Another week has passed and our therapy is coming to an end for this round. Jen asked me if I wanted to continue and I told her for the sake of our family, we needed a break. Chris has one more treatment on Monday and a visit with Dr. Prestridge and then we head home...for a few weeks.

Chris continues to do well with therapy and for the matter at hand...when he's not at therapy. I've struggled this week with stopping versus keeping going and if it's doing anything and what have you. This is the list I've come up with, but let me remind you first, that before therapy started, Chris had no sounds and choked, coughed and gagged on every meal and through the night!

Since therapy we:
1. sleep through the night with no coughing
2. eat a meal with rarely a cough - still an improvement from the "clearing" cough
3. tolerate big boy foods
4. have multiple sounds, including: mom, da, ba ba, cup, up
5. rarely ever do we choke
6. have a very dear friend in Jen - this may be a stretch! :)

I swear the list was bigger earlier. The sounds in and of themself are HUGE!!! We also have growls and grunts and all sorts of funny noises. His latest thing has been furrowing his eyebrows and he knows that exactly the right time!

Our legs have had no improvement. There are most likely going to be PT appointments coming up, but hopefully we will get to do that from here!

The boys are back to school on Tuesday and it will be great to get back to normal.

Tuesday

Whew...we've been busy since the last time I've updated. I worked a couple shifts, we had Shoemaker Christmas, had a little man turn 1 and made yet another trip back to Omaha. Somewhere in there I did laundry...I promise! :)

We remain status quo...which I am content with. Chris is doing great...minus the big bruise on his head I accidentally inflicted this afternoon. We were playing in the kitchen here at Grandma K's and...BONK...onto the hard floor! I can say however, that he has still had less bruising to his cranium than either one of the older boys have! :)

The funny thing is that he's started grunting and growling. To get playing with the big boys or getting mad at you he growls. He'll even just crawl up behind you and growl at your heels. It's hilarious. I wish I could share it with everyone.

Anyway, we are on to 1 of our last 5 treatments for the year. I was reminded today that we have been making this trip back and forth for 3-4 days at a time since the Week of Nov. 8. Oy! I'm not sure where the time has gone!

Anywho, he is doing great and tolerating treatment just fine. His every move and everything that goes in to his mouth has started to be documented. After my scare last week, I have resorted back to baby food which Jen wanted me to get him off of, but it is the only constant that I can keep with going from Aunt Claire's to Grandma Shoe's to daycare. In the last couple weeks I've learned about watching for residual and what to do if it's there and how to clear if it is and how to change the viscosity of the food if it is...I didn't feel like sharing that with all the people that feed him and he does great with baby food! :)

Jen and I have come to the conclusion though that we thing his swallowing is worsened by the copious amounts of snot and mucous he has. I have been giving him a decongestant, but it makes him so sleepy and when he fatigues and we try to eat...you guessed it...more issues...so it's just a viscious cycle.

Tomorrow we will have therapy in the a.m. and then see our favorite Dr. K around noon to see what he thinks about the mucous issue and to just discuss with him what he's thinking. I can share with you that, after 3 emails and much, MUCH suggestion from him, we see genetics...in March. That was the soonest we could get him in. He is however, on the cancel list. Dr. K's point was the fact that with hypotonia and the dysphagia, they are not definite diagnosis. They are symptoms that can lead to other diagnoses, many of them syndromes. He stated in his emails that there are some pretty serious ones that we may want to know about for the future.

With that said, if you read the front page of the Omaha World Herald Sunday, you may be following me, if you didn't I put the link on my facebook or google it! It's worth the read...just keep kleenexes handy. I will be honest...I bawled through most of it. The only symptom that this child had that Chris hasn't...respiratory distress and with our mucous trouble and aspiration problems...it worries me. Now, do I think he has what this other baby had...no, I would hope if he did signs of it could be picked up on the MRI, however, it just makes a person think.

It's been hard lately watching kids his age and younger, walk and talk and do things that he should be doing and not feel sad and frustrated about it. I remind myself that things could be TOTALLY worse, but I know he'd love to be running with the big boys. He'll catch up eventually I know, but I just worry as to how long that will take. Our EDN services were denied because he is where an 11 month old should be so he's "Not that bad." Cognitively he's on track.

We celebrated Chris' birthday Sunday with family and it was so much fun. Chris ate it up. I propped him on the table to open his gifts and he did so good! We are truly blessed to have such an amazing family and close friends! We even celebrated Jack's birthday (our nephew) which is tomorrow.

This week has been better for the big boys. They got to come down with me and get completely spoiled by Grandma K on Monday, which then drove Mom nuts Monday night! God bless the woman, but I'm pretty sure she does it on purpose...she just needs to wait til her son is around!! :) HAHA! Kidding! They had a ball. Tonight we went to the Western Heritage Museum and after a 45 min wait for Santa we were all ready to run wild! The boys were SO good though.

They've had fun though. Today after Chris' therapy I took them on a tour of my favorite places in Omaha and showed them where I used to live when I met Jason and where my Great-Grandma Chris lived and where Grandma and Grandpa Shoemaker met...technically. It was so much fun. Drew loved every minute of it and Matt could care less. Chris slept through it all!! :)

We head home tomorrow and then I work my 2 shifts, including part of the holiday. I would be lying if I didn't say that I am looking forward to our break from therapy. It is doing great things for him, but it's running me ragged. I told Jason tonight that I am taking a 24 hour personal day in January! :) He was okay with it...I think he knows it will be good for his health and safety too! :) HEHE!

Dr. P

Therapy went well again this morning. I learned potatoes may not be his thing. They work well at therapy though because the vitalstim machine helps give him the extra strength he needs to swallow them.

It's just so much to wrap your brain around and I've never had to think about food so much and put so much thought in to it. You have to factor in viscosity and texture and everything else he's eating with it. OY! We will make it though! I just open up my mouth and swallow! :) Chris has that problem too...his just gets stuck! :)

We saw Dr. Prestridge and she said overall she is happy with him. She too, is thinking along the lines of hypotonia. Not sure as to why, but should that be the diagnosis, if we ever get one...that makes a lot of sense, even from birth.

Anyway, she stated that she is okay with the choking and the coughing in his case because it is his way of keeping his airway clear. She said that if he was having numerous lung infections, it would be a different story, but for now he's not.

Because he isn't having the lung infections, she does not want to put in feeding tube in...YAY! She said that she is afraid that once she puts it in, it would take a long time to get rid of it. This being because he would get everything through a tube except for at therapy and then our muscle strength would go down hill...fast.

So that's where we are at. We continue with therapy and hope things get back to where they were last week. I have to retrain my brain to know that choking and coughing is okay after he eats or between or whatever because it's his defense mechanism. We will follow up with Dr. Prestridge in a couple weeks. But she sure likes how he likes to flirt with her! ;)

Not So Good

The rest of the day did not go so well. When I had called Dr. Prestridge's office they said that she would either call me or call us back to come in....We see her tomorrow at 11:30 a.m.

I didn't starve him, but kind of gave him a rest. Gave him his first food after therapy which was a 6 oz bottle around 3:30. He did GREAT! We threw in a few little yogurt melts and no problems. A few coughs, but nothing that concerned me.

Supper, however, was a completely different story. I mashed up some potatoes that Cindy had made and yeah...not so good. The first bite, choke! He gagged and spit it back up so I gave him a break and we tried a second bite....CHOKE! Seriously?! Then he gagged and gagged and gagged! He gagged so much after choking that he threw up multiple times!

I cut off the potatoes and brought out some babyfood bananas and...he did fine! Did some of those and then tried the potatoes again...and fine...however, once we were all done eating...Choke and gag! So we just hung out!

He was starting to get a little fussy so I thought I'd try another bottle and he did awesome! Only one cough and we were asleep! He's been pretty good since.

Ugh!!! I am so frustrated. Jen and I are anxious to see what Dr. P has to say.

The exicting news for the day...we started to take steps!!! :) Just small ones, but we went back and forth from the recliner, to the end table and then to the footstool! So exciting, exciting.

Just wait and see what Dr. P says tomorrow. I am just hoping for sleep tonight.

Up in the Air

After a horrible, HORRIBLE night and taking food away from Chris...the night was horrible! He coughed and choked and cried and repeated that cycle about every 2-10 min. He had about an hour of pure rest. I was so scared last evening and for 4 hours contemplated whether or not I should take him to the ED. He would cough and gag and choke. He just laid on me limp and cried. At times he would cry and then maneuver so he could tilt his head back and get his airway open. As a nurse this scared me, as a mommy it terrified me.

He had therapy this morning at 9 and immediately Jen was assessing things to see if she could figure what triggered this episode. We didn't find anything in common that would red flag us.

We did therapy and of course, he did great! No episodes for Jen and she assured me that she believed my assessment and that the reason is was doing good today could very well likely be because we had him hooked up to the vitalstim machine! He didn't cough much after for Jen, but since we have left it's been almost a non-stop cough. I have him resting now.

Jen and I decided that we should talk to Dr. Prestridge. We both have a feeling we know what is coming...a feeding tube, which neither one of us want, but we sure don't want to keep his airway threatened like I feel it was last night. I was just so hopeful that we could put this to bed altogether.

I just sit here and wait for Dr. P to call or Dr. K. Put a call out to him too! Jen's kids see Dr. Kronberg as well so she and I have a lot of comfort and faith in him as moms and professionals.

Will update more when I know what else is going on. I'm hoping we test therapy for another week! At the same time though, I don't feel safe bringing him home with how he was last night.

Set Back

It's been a rough few days for Mr. Christopher! Last Wednesday, Jen thinned his liquids just slightly and it seems like we've been fighting things every since and they've progressively gotten worse.

Wednesday the cough was back a bit and then Thursday and Friday it was back in full swing with relation to feedings and it sounds horrible. Friday night we had a choking incident and I told Jen that I wasn't too worrried because it didn't have much aftermath, until today. Let me rewind...Saturday night was horrible, he pretty much coughed and choked the whole night! It was horrible. We didn't sleep much.

Today didn't get any better. We had Chicken casserole for lunch and I tried the noodles, but he choked on those, so I switched to thickened baby food, went a little better. We had a rough afternoon, then at supper, he had thickened baby food again and milk from a cup and he choked on every almost every bite.

It's so frustrating. I've been in touch numerous times a day with Jen, our therapist, and we are both baffled. The poor baby sounds like he's hacking up a lung when he coughs! His poor little chest just rattles and he sounds so congested, but as far as my ear can tell, they are mostly clear...but they do sound a little gunky. He coughs so hard that he cries afterward.

I'm not going to feed him again until we see Jen in the morning, we may be visiting with Dr. Prestridge this week and most likely another swallow study to see if something has changed. He's getting very fatigued with his feedings and not sure as to why. I have a feeling we will be seeing Dr. Murphy as well.

This evening has been horrible, he continues to cough and choke with no stimulation whatsoever, so I know the stridor is coming. All of this that Dr. Murphy didn't want to happen again.

The hard thing about it is that we will do appts and tests this week and Tuesday I have to give up control and hope that things are figured out before I have to come home Tuesday night to work Wednesday. Chris will stay here and I will have family in Omaha take him to therapy and then other family meet them halfway on the highway to get him home.

Not that he won't be in great hands, but it worries me because I can't control his intake and monitor his every move...moreso every breath and swallow. We are still on that fine line with a feeding tube and tonight I'm not very hopeful that it is compeletely out of the picture.

The next couple days will be the tell all!

Perfect Night

We are done with 4 treatments now. The plan is to keep doing the 3 day a week treatments until the end of the year to use as many of our days as we can. Then at the end of that we will take a break until Spring. His thickening will be whatever he is on at our lost treatment.

Monday night we had a BEAUTIFUL night!! No coughing, choking, congestion, drowning sounds...just sweet baby purrs of sleep. He hasn't slept that well in such a long time. I'm so excited!!! Ever mile that we drive up and down the road for therapy is worth it.

We finished our 4th treatment today and he did good. Jen was able to thin his liquids slightly and he did good with them. He is loving drinking milk out of an open cup. He doesn't want to waste his time with the sippy cups. Fine by me!

Three more weeks of therapy and the last 2 the big boys will be able to come with me and Jason will be with us the final one. Our next 10 days is very, very busy. With Christmas celebrations, birthday parties, therapy and work.

My biggest prayer is that my car starts in the morning...it's not working right now! Ugh!