ENT

We had our ENT appointment yesterday and all went well. We aren't much further ahead, but small steps are greater than no steps.

Dr. Nabity put a scope down he's throat to see if there was something that was not letting his vocal cords or larynx or pharnynx work proper while he was eating. Fortunately that was working just fine. He stated that his sinuses are very congested and he swabbed him to see if there was something in there that was resistant to the antibiotics that he's already been on. He also said that when he scoped it that the esophagus wasn't red or irritated. He said that he would have expected that with reflux.

He did say however, that he has lots of fluid in his ears and stated that he would suggest putting tubes in his ears. I was in accordance with that and told him that if he didn't suggest it, I was going to beg for it since all the trouble we have had with Matt.

He questioned allergies and I stated that the other boys have them so i wouldn't be surprised. So we will get in to see Dr. Murphy as soon as we can possibly.

The positive was that since we are doing the MRI on Nov. 18 and they have to put him to sleep, Dr. Nabity stated that he was going to talk to Dr. Denman, the ENT that put Matt's tubes in, to see if he could put his tubes in on Nov. 18 while he's already asleep. I will know next week if this will happen or not.

So thatis where we sit as of now. We continue therapy and I feel things are improving. He likes to stand next to the couch and can stand there for a couple of minutes. He has to stand no matter what now. He knows he can so he has to do it.

Our next stop is GI! Not Grand Island, but gastrointestinal. :)

Hot Stuff

We are one week closer to our MRI. We had our first PT appointment last week and have been working on out exercises. Papa Shoe built us a box to utilize to get up and down and Grandma Shoe bought us a ball to stand up next to, which helps us utilize our muscles to work on balance. We also work on getting on all fours and then sitting on our knees.

In just a few short days, I've noticed that we can stand better and don't fold at our waist in 30 secs. He loves to sit on his knees and thinks he's pretty hot stuff when he does it!

Thursday we have our ENT appointment and after being put on our 4th antibiotic I'm feeling some tubes coming on. We also had to start on breathing treatments for our nasty sounding lungs that I'm sure started about 10 days ago when he had a choking fit.

After the ENT doc we go visit the GI the following week for a couple days.

I'm hoping for answers to come soon.

The big boys got their Halloween costumes on Thursday and are EXCITED! Jason will be home and I'm not sure who's more excited, he or the boys.

terminator

One of the boys' favorite shows is Billy the Exterminator and I'm not exactly sure what channel it's on, but I'm thinking its National Geographic or Discover. It's about this off the wall exterminator down in the south with long blonde hair that wears black leather.

Anywho, when Matt discovered it was on the other he went running downstairs to Andrew yelling...Billy the 'Terminator is on!

I guess we will work on that word in speech, but it was super cute! :)

Wild Things

I spent the last couple days in Sioux Falls at the Avera Nurses Conference and althought it was a good conference, it meant time away from my babies. I'm getting used to this part time thing and lots of time home with the boys!

Their halloween costumes arrived tonight so they were even more excited! I have some dead skeleton pirate thing, a jailbird and a monkey! It's pretty cute! Absolutely wild though!

I think the hilight of Andrew's day was being surprised at school by his Uncle Tim with a John Deere tractor to show his classmates since he was the star student. Then he got his report card and it was very good...just gotta keep working on a couple things!

Chris just crawled all over me like a crazy boy and the other boys just romped on each other. THey have no school tomorrow so we shall see how the day transpires. I have a lot to get done around the house before our next trip to Omaha and yet no real free days to get it all done. Looking forward to Jason being home!

I do have to share a funny story. This summer, my brother in law, Luke, was trained to drive one of the buses for the school...ironically enough...it's the short bus! :) Everytime we drive by the school Matthew goes..."Who drives the short bus?" and waits for someone to respond..."LUKE!" Then he goes..."yep Luke drives the short bus!"

The irony to this whole thing that happens EVERY time we drive by is that Jason and I are laughing for a a reason that they don't understand! Gott a love it!

Oh yeah...another funny...Chris was tootin' tonight and after each time he passed gas he would giggle. Such a silly baby!

CONFIRMATION!

I just watched the little stinker pull himself across the groom with is arms on his belly to then get where he wanted and then...SIT UP!!! Yes, he sat up on his own!!! :)

I'm so excited. SO EXCITED!!!!

Exhausting day

Yesterday was an exhausting, frustrating, yet exciting day.

The days are always exhausting when I am up with Christopher all hours of the night and then have to get up and function during the day. I don't function well I will be straight forward! :)

But as I had been up at 4 a.m. with Chris and he spent the last hour choking after his bottle, I had enough! I emailed Doc and was upset. The way he eats and then chokes was not normal and I was just frustrated! As the day progressed, we landed ourself an appointment to see a GI doc in Omaha and then see ENT next week.

Our MRI remains the 18th of November.

It's all just exhausting and emotionally draining. We did PT yesterday and have things to work on now. And the exciting news is that he sat up on his own yesterday!! :) Just once and not sure how he did it, but he did it!!

So we get to sit and wait.

Breathing

My poor Drew is not liking the weather. This part of the year is always hard for he and Matt, but for some reason or another, it isn't bothering Matt much. But my poor Drew is having trouble breathing. So out the nebulizer comes. He tries not to complain, but as I hear him wheeze across the room, I know it must be hard! I just wish there was more that I could do for him. We just need to get to cooler weather and not so much fluctuation!

Head Way

I gotta love warrior docs. I feel like we made some head way today!

Through my friend Amy that is an OT, one of our PTs here in town agreed to work with him until EDN starts. LOVE this! We start on Monday!

Then we also drew his lab today in hopes that if something is off, then we can move the MRI closer. Doc did talk with Dr. Wright today and said that it is a scheduling problem and that is the soonest that we can do the spine. I'm not sure why we could do the head tomorrow and the spine not until November...but whatever!!

He was such a little champ when we drew his lab. Kendra poked him and I gave him a big squeeze and he fought to get loose and once we sat him up, he was just like...what the hell people? And was content! What a champ!

So I'm happy with the progress. Besides, he has to get over this nasty sinus infection that he's had for weeks upon weeks. We've been on antibiotics and prednisone and nothing is improving. His lungs last night sounded like crap! I informed Jess that this is why I like adults...it's all more cut and dried...usually!

School Day

Matt fell asleep on the bed with me this evening while I was watching TV. When Jason went to move him to his bed instead of lifting him up and putting him in his bed, he instead said...Get up Matt time for school.

Matt wearily walked out into the living room and sat on the couch and attempted to wake up. Jason told him to hurry up and get ready for school. After a couple seconds I told him that it was late and to had back to bed.

He did...like a Zombie! Jason thought it was HILARIOUS!

Long Wait

I have nothing much new to post. Fall has set in at our house and until it stops going from 70 to 30 every day, the boy's lungs will keep fighting it. We had to pull out the nebulizer tonight! Gotta love allergies.

As far the neurologist front, nothing. I called the other day and they couldn't change things. I expressed that I was concerned that we were waiting 5 weeks and the nurse really couldn't explain much more than...well that is when they could get him in. I also voiced concern about waiting for his labs that long and that response was...You could bring him down and we could draw them. She then went on to explain that they were trying to prevent a poke, which I appreciate, but his thyroid level and other levels could be COMPLETELY out of wack by then. I doubt they will be, but you never know!

The Early Development Network won't touch him...or i should say...would prefer not to touch him until the MRI is done so they know what the diagnosis is. All of this leads to delay. Delay, delay, delay.

Today he has started to stand...granted it is for seconds, and is only with locking his knees, but he was upright and thought he was pretty big stuff! I tried some resistance exercises and he didn't resist. He does try to pull himself up though and that excites me. He made it up twice, but his legs have to be just so and something has to be in front of him so he can't slide.

So now...we wait. After some advice from Jess (sister-in-law), I will call omaha again tomorrow and ask to speak to Dr. Wright and voice my concerns again!

Patience...patience, I know...but I do not have patience! :)

I again keep reminding myself that he isn't fighting for his life, although it may be altered, he isn't fighting to stay alive. It is all in perspective these days as my co-worker's little man fights for his life and waits for a heart transplant. He's 1 month older than Chris.

Darn Google

Thanks to my amazing best friend...AKA Google...I have had a few scares the last few days on top of worrying about the Chris stuff that is going on.



We had a patient that came in with a disorder that some of us nurses were unaware of, so to better our knowledge...we googled it! :)



In reading through the disorder, I learned about cafe au lait spots and after seek a picture...this was on Chris' abdomen. So again with the tears. This could be a marker for neurological defect, according to google. So I cried some more and worried. Then when in the ED at Children's on Sunday night...that story to come later...the doc said...why are you going to the neurolgist, because of the spot on his belly? The little voice in my head went....He just confirmed it, google was right, the neurologist appointment is going to be HORRIBLE in the morning.



WRONG!!! Dr. Wright stated that children need up to 5 of those spots for it to be a "deficit" related spot...otherwise...birthmark! :)



My other scare started with the same patient at work and having difficulty breathing. Chris is congested which is another thing he has always been....and he got to coughing and turned bright red, then blue. After a 1/2 dozen times of this, we ended up in the Children's Hospital ED. This over reacting mother was calmed down and probably looked like a moron. I just kept thinking, what if he does this while I'm sleeping? The Dr. in the ED...Dr. Tolo, was very nice and stated that he probably had a mucus plug and all the coughing up to getting seen, knocked it loose and he was now fine. So to bed we went!



Oy, not sure how many of those I can take! And that's just with one child!

Neurologist

I must apologize that I haven't gotten back to many about this. The last few days seem like a blur. So, I will start at the beginning.

In Chris' well baby check ups, he head has always measured large. What can I say, all my children have large heads. Andrew's was 14 inches when he was born, if I remember correctly. For awhile, it was following the growth curve, so it wasn't as much of a concern, but then at his 9 month check up, it made a jump.

To add to it, he doesn't use his legs much. Yes, the little man rolls like a maniac around the room and gets into everything. I'm always amazed at what he can do from his belly, reaching 6 inches or so off the floor! Anyway, he doesn't like to use his legs. He doesn't stand much and when you try to get him to stand he just holds his legs up. Even when he is in his exersaucer/jumper he uses his hands to go in the circle.

Then he also was sweating perfusely at the oddest times. Often in the middle of the night and especially when he eats.

So, at his 9 month check up, with all of these concerns voiced, Doc. decided that it would be in his best interest to see a neurologist. I agreed.

At this point, I handled it well...until I showed up at Carhart's to talk to my mom...10 min later, and I lost it! In the middle of the store, I bawled and bawled and bawled and in between sobs I told my mom what was happening. This was the routine until about 3 days ago. That's when I was finally able to talk about it without crying.

At first our appointment was Nov. 8, but Doc was able to get that moved up to today, Oct. 11. So off we went to Omaha and met Dr. Wright, a very cheery and thorough doc who asked all sorts of questions, and brought my attention to things, that I never knew were related.

She said that she wasn't that concerned with his head, because after measuring our heads, his head circumfrence plotted out close to mine and Jason's. He's just gonna have big brains like his momma...or a lot of empty space, according to his father.

Then we spoke at length about use of his legs. I said it's been like that since day 1 and hadn't thought much of it until recently. I mean, I knew he wasn't like the older 2, but in a way chalked it up to being kiddo #3. What got me concerned was him not sitting up. He can sit up, but he can't go from a lying to sitting position, you have to put him in the sitting position. He will also not get on his hands and knees and if he does, it is briefly, for seconds. She also made notice that his legs flop, almost like he lacks muscle tone.

She then asked about his stooling habits and if his stools were hard, which they are and always have been...and then it clicked for me...was she questioning a form or something similar to spina bifida. I couldn't bare to ask...so I didn't. She also pointed out that in comparison to his hands, his feet are small. I had always thought his feet were HUGE!

So she concluded that she isn't concerned about the head...did I say that already, but the legs do have her concerned and we now have to MRI the spine to see if there is any tethering of the lower spine or a tumor that is present. We also need to contact early development to get him on a PT/OT regimen. She did state however that with the leg issue, it could just be inability to hold his weight, which is still below Drew, so maybe he needs to buck up! :)

I'm not sure that this has sank in yet. I just keep telling myself...what's the worst case scenario? He has to use a walker?...and a friend of mine has proven that this is manageable.

The good news is that he is on track cognitively, if not a little ahead said the neurologist. The bad news is the next MRI isn't until Nov. 18, which I am trying to see if we can change because I'm not sure my mental health can wonder about those things for the next 5 weeks. He will also have quite a bit of lab drawn at that time as well.

I need to thank everyone for their prayers and thoughts of encouragement and shoulders to cry on. It's not life threatening and we are very blessed to have a healthy boy, but it doesn't mean I don't worry.