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.

Great Day!

I got to thinking that I need to sit down every day and write what the boys have done, are up to or what they pulled off and got away with. However, I need to get it done before midnight! :)

Andrew amazes me every day. He wants to read and does his homework and school work well...when he's not in a hurry! He was so helpful today. He emptied the dishwasher and vacuumed the living room...granted I had to do half of both tasks, I didn't mind! And before you turn me in for child labor...he was compensated for his chores. He also helped me mow which made my day. It goes by WAY faster when there are 2 of us working on it. He was fantastic until the storm came through. He HATES storms. Needless to say...he's in my bed.

Matthew...what a silly boy! He's been my snuggler the last couple days. I'm not sure what's going on, unles Lily's arrival has affected his world as well. He wants to bad to be independent and to have the same things and responsibilities that Andrew does, but when asked to follow through on them he is very happy to regress! He ate hot lunch with Andrew today and believe it or not he ate it well. He is loving Mommy being home more.

Mr. Christopher. Talk about a kid with personality. He is so laid back and happy I'm not sure what to do with him. He was fine until Miss Lily came along and realized that Mommy is holding another baby! :) Now he has to keep me in his sight at all time. He doesn't say much, but when he can't see me I hear him say "Mom" and then when I come around the corner to praise him, I just get a grin from ear to ear and this look like..."What are you talking about?" He is so close to crawling. Right now he just kind of rolls back and forth on his stomach until he gets to where he wants to go...Needless to say, he can cover ground in no time flat!

I will try to keep this up. The boys love to read their Mom's thoughts about them! Until tomorrow, Sleep well my boys!

New Backpacks

School starts tomorrow and I got the boys new backpacks this year. Andrew didn't need one, but I got him a good one with the threat that he doesn't get another one til junior high.

As we were getting ready tonight for school in the a.m. I notice that Matt is franctically digging through his bag and so I asked him what he was looking for and he says..."My new phone."

He carries a toy phone with him most places so I thought I would clarify..."what phone."

His reply..."The phone that came with my bag. It's not in here. We have to take it back!"

There was a tag pointing out the media aspects of the bag with a picture of a phone on it!

Oh BOYS!

There are always a thousand things that I want to write down or blog real quick everyday, but since Chris has arrived, that doesn't happen so well! Today, just reminded me how fast the boys are growing up.

Andrew got his hair cut today and sat in the chair to get it cut and usually I just tell them to cut it short, but this time he wanted it cut this way, but not that way and this short on the side and medium short on the side. Then reminds me it's shot night (allergy shots) and then helps Grandma Shoe out at the paper. He then returns home to play outside for a bit to then help clean the living room and by this time...it is time for bed! I look at him and wonder where time has gone! He is getting so big!

Matthew...let me just sum him up by this...he comes up to me tonight and says...Mom, I want to go to China tomorrow! You can come too! I'm not sure where he comes up with this stuff. While Andrew was helping clean up the living room Matt bursts into a full out bawling session. I asked what the matter was and he informed me that he was baling and that Andrew has ruined his hayfield. Oy vey!

I know I'm gonna blink and then be celebrating Chris' first birthday! He's more and more smiley every day. He's just so content and laid back...for now! We are still dealing with the RSV and although the breathing treatments are getting fewer and further between, the nasty cough is still around and harsh. He coughs up nasty stuff and then chokes on it. He doesn't like when I go in with the little sucker to help him out! He's learning that things are going on when he's sleeping because he's starting to fight his sleep! All of thise before he hits 3 months!

8 weeks

Wow...8 weeks...that seems crazy!!! I can't believe it!



Mr. Christopher went in for his check up today and weighs 11 pounds 10 oz and is 23 3/4 inches long! Although that seems like he is doing awesome...which he is...in comparison, Drew was 10 lbs at 2 weeks and I can't seem to find Matthew's!



Christopher woke up this morning smiling and giggling in reaction to those around him!!! He's such a laid back kiddo, but when he has his mind made up...WATCH OUT!

All worked up!

I put Chris in his swing tonight so I could get a couple things done before I needed to feed him one last time!

I looked over and his arms were flailing and he was huffing and puffing, looking off to the right! The minute his hand hit the toy giraffe that is on his swing...he calmed down...until he moved his hand that is! :)

Then the cycle began again!

Plan B

Well...we lasted on formula until about 10:30 last night as Jason and I could take any more of hearing Chris scream after each bottle! This wasn't our baby! So we gave him a big bottle of breastmilk and 30 seconds later he was content and asleep on my lap. He woke up 90 min later and had another bottle of breastmilk, but then he slept for 6.5 hours!! That was awesome compared to the previous night of him screaming for hours at a time!

I called Dr. K's office today to report that we gave it 31 hours, but he was screaming after each bottle so we went back to breastmilk and if he had any more to say! I was able to report that his jaundice had lessened, but wasn't gone!

He called back and said that although it was good that it was lessening he wanted to try to do 1 4oz bottle a day, with optimal being 2! This was a little better, knowing I could have him calmed down by bedtime. However, he barely drinks 2 oz of formula at a time...how is my little man gonna eat 4? I mean, it's already bothering his tummy!

So, in tweaking his orders/suggestions, I figured we will do formula in the morning and I will still give him the 2 oz at a time because I don't need to make things worse for his tummy!

I just have to get to Friday! My goal is 8 oz of formula for him! That's what Dr. K wants...his delivery may just be slightly different!

Breastmilk vs Formula

I have busted my nuts these last 6 weeks...yes 6 weeks! Can you believe it?! :) Anyway, been working my tail off trying to get this breastfeeding thing to work and to have enough milk for Christopher. He's remained jaundiced and when at 5 weeks we took him to meet Dr. K...he was very alarmed by his color. He checked his bili and it was 12.2 and that's where it's been hanging out!

Dr. K was worried that his liver wasn't functioning right, but his direct bili was 0, so that was a good result and showed his liver was fine. He also did a CBC and although everything was fine, he was slightly anemic. So in true Dr. K fashion, he was worried that something else could be going on.

When he talked to me on Friday, he suggested putting him on formula for a couple days to see if the jaundice would go away and then he would know it was breastmilk jaundice! Although, I knew this worked, I wasn't too set on it! I pondered it Friday and thought...ya know...I'm just gonna keep nursing him because I've worked so hard to get it to work and I am doing this to help protect him against allergies or lessen them maybe!

When Dr. K called Saturday morning to check on him and discuss things again and expressed how worried he was and that he would probably do more testing if we didn't do the formula test just to make sure that he didn't have another hemolytic disease or something!

After crying to Jason about how frustrated I was that I had worked so hard and that I was scared to give it up because I was afraid he wouldn't go back to breast milk again, we decided that if he saved him pokes it was in Chris' best interest!

We started formula at 4 p.m. yesterday and let me just say, last night was hell! He doesn't like the formula, which yay for me in a way...boo for my sleeping pattern! He just screams at times. For 6 weeks, he has done not much more than whine or fuss for a couple minutes, but this is screaming! He's not content what so ever!

I feel horrible, but will be glad when this trial is done in the next few hours.

I don't think so!

For those who are around Andrew a lot, they know that he is quick to respond and always HAS to respond!

The other day we were on our way to Grandma Shoe's house and Matt was trying to ask me something as I was trying to back out of the driveway. I told him to hold on a minute and in the meantime Andrew attempted to answer and this was Matthew's response:

"Andrew, I'm talking to Mom! Is your name Mom? I don't think so!"

Where he got this, I'm not sure, but 4 days later I am still getting many chuckles out of it!