"ATTEMPTS TO FEED" PHOTOS

THOUGHTS FROM MAX

After that weird study Mom and the doctors made me do the other day (did you see the photo of me with that white stuff all over my face...barium, yuck!), I have not been very interested in tasting anything but we do keep trying. Several times a day Mom has that spoon in front of me and she thinks if she smiles a lot and makes funny faces that I will think this is great fun...she's not fooling me! I am keeping my mouth closed! No more barium!

Maybe I will ease up in a few days and let her back in, but we'll see! For now, I'll keep making her work hard! :)

Check out how cute I am in my latest photos...yep, that's me, more and more handsome every day!

Love to all, MIGHTY MAX

I am wearing a bib for the very first time. Mom was soooo excited! :)

My OT lent us this funny lil' chair to provide me the "ultimate position" for feeding. My house is getting quite filled up with all these therapy gadgets, but heck whatever works, we'll try it!

DIVORCE UPDATE

Thanks everyone for your continued support on this very painful and frustrating issue.

Today I am having to work on some divorce matters and I thought it was about time I brought you up to date. Many of you have emailed me asking what is going on with the divorce, when will it finally be over, is he being agreeable, etc. I have hesitated on posting anything lately to avoid the "not so sweet" emails afterwards from my soon to be ex. (He says the blog should be called "bashvicupdate.com" which many of my friends said they would love to put together!!! Boy would that be an interesting website!!!)

Unfortunately he doesn't understand the impact of his actions on Maxwell and how relevant it is to our daily life. The more stress he brings to my life and the more financial struggle we endure, the less I can fully give to Maxwell emotionally, physically and financially. And I don't want anything to impact him negatively and I will fight tooth and nail to get what we deserve so that Max has the very best chances for a good and happy life.

Anyway, all I care about at this point is getting a fair distribution of our assets and equal financial support since I cannot work due to Max's health and development. Fortunately he is paying what the court is ordering him to pay at this point (not a fair division but at least it is something), but there is much more to be discussed. He has no concept of what is needed in Max's life, but hopefully he will see the light someday. I keep encouraging him to get involved and learn more about CHARGE, his care, etc. but recently I have begun to give up that effort because it was proving to be fruitless.

What is frustrating in the divorce is that I built my businesses (we own 8 Curves together back in WV/PA) and now he is getting 50/50 of them. In WV law, it supposedly doesn't matter if someone caused the divorce (adultery, etc.), it still is 50/50 distribution. Then he bought five additional businesses while Max was in the hospital undergoing numerous surgeries. Unbelievable, right? I know. So while I will be staying at home with Max for years to come (and living on limited alimony/child support), my soon to be ex will be advancing his career, building business equity and increasing his wealth. Understand the frustration?

I would LOVE to be working...I absolutely loved my career and miss it tremendously! But I know that Max's health and development is the #1 priority...I wish others felt the same!

So I guess the next step is our "status conference" in a few weeks and then hopefully the final hearing will be in April. I was hoping to settle out of court. Unfortunately we have been unable to come to a resolution, which means I have to travel back to WV for the hearing leaving Maxwell behind (he is not stable enough to travel). I am not happy about that at all. I have no idea how I am going to do that...or how he will be cared for...most likely we will have to hire nurses to be with him 24/7.

It is ridiculous how long this has been going on. I was so hoping we could come to an agreement so this could be over once and for all and I wouldn't have to leave Maxwell for even a minute. My heart just breaks thinking about it!

I decided during this time to also change legal representation and am feeling very hopeful about their abilities, but of course that has required extra time and money to catch them up to speed.

It is so absolutely frustrating it is to be dealing with all of that while trying to celebrate Max's progress in so many areas these past few weeks. But I guess we gotta do what we gotta do!!!

Anyway I best run to work a little more on these divorce issues...and then when Max wakes back up, we need to make our nearly daily run to the drug store for prescriptions! And then back home for lots of therapy and hopefully baby food tasting!

WOO HOO!!! MAX PASSES TEST!

Yesterday we drove to Children's for a swallow study by a speech pathologist. And drum roll please....HE PASSED!!!

Ok, it was by no means perfect...far from it. But he is showing that he can swallow (AWESOME!), it just requires a lot of work and time. Because he has not fed by mouth before, he is very, very uncoordinated with his swallow but it does eventually happen.

They want me to move forward with what I am doing (yay for mommy's instinct!!!) and really put a lot of emphasis on trying all different kinds of textures and tastes many times a day. We still are only going to do small amounts but working up to bigger amounts (like half a baby spoonful), knowing that at times he may aspirate a little. But she said to make progress we have to take this chance. I am going to run this by the pulmonogist just to make certain though...we must protect those fragile lungs!

How exciting is this!?! I am sooo happy, but I'll admit that I am a bit nervous to move ahead because I don't want him to have any respiratory setbacks. But heck, we are making great progress!

And this morning I pulled out a bin of all of his baby bibs...we finally get to try and use some!!! WOO HOO!!! :) I had put them all away because I would get so sad seeing them in his closet...we had no idea if he would ever be able to eat by mouth.

Here are two fun photos!

The speech pathologist and I were talking beforehand about our love of scrapbooking. So before we started the study, she said wait, let's take a photo of this...it would make a great scrapbook page! How thoughtful!

See him in the little chair? He's looking all around saying, what the heck am I doing here? The machine on the right is what monitored his every move during the study. We could see each and every muscle, bone and movement...it was fascinating!!!

And no that is not a funky dress I am wearing, it is a protection gown from the xray machine...felt like old times when I wore one practically every day in the hospital with all of Max's tests!

This is "post study" with the infamous barium ALL over his face! What a sight!!! They kept telling me to give him more and more and he wasn't used to having that much in his mouth so he kept drooling! I was probably more nervous than he was!

PHOTOS, PHOTOS, PHOTOS!!!

I have got a million and one things to do today, but I can't help but distract myself for a few moments and post some adorable photos of Maxwell. Bragging about him is definitely addicitive!!! :)

Yep, there's my man...looking sooo handsome!!! And what is super fun is that this outfit is a hand me down from Jackson to Thomas to Maxwell and it was an original gift from me to Jackson!!! So of course there is a doggy on it!

And here he is enjoying his mouth! YAY! He is getting better and better every day with his binky. With his VERY high palate and weak suck, he can't yet hold it in there for very long but he is making progress!

Max is just starting to giggle...and it is the best sound in the world! (Sounds more like a snort, but to me it is absolutely precious!) Here Jackson was forcing his fish to go around faster and Maxwell starting laughing and laughing. It was sooo great! They both were having so much fun!

Max has decided my hair is absolutely delicious. Here he completely entangled himself with it and was absolutely delighted.

And oh yes, my face is very fun to explore too!

Actually earlier this week he did so much "exploring" that he gave me a bloody nose! He stuck his finger WAY up my nose and before I could stop him, he started exploring even more! Sure enough...a bloody nose.

Perhaps it was pay back for all the suctioning or for the bloody nose he got last week! He was doing therapy with his PT and when she was practicing rolling over with him (he doesn't do that himself yet...but oh so close!) he bonked his nose. He definitely let us know about it! It was so sad! Ok Max, we're even!

This is Max's "look" right before he loses it! He can only stand tummy time for very brief moments. Each time I set a goal for him (ok Max, lift your head three times)...but once I see this red and frustrated face, I know the end is near!

Here is Mighty Max doing some therapy with Eileen, his Occupational Therapist, with the local neurodevelopmental clinic. She is so good with him! We are blessed to be in an area with such expertise!

SWALLOW STUDY TODAY!!!

I have been trying to coordinate all the different therapists and doctors this week to decide what to do about the swallow study and last night we got a "go ahead." And perfect timing! They had a cancellation for today so we are heading to Seattle in just a little bit!

I am so excited, but nervous too. Yesterday the OT was encouraged that Maxwell was so interested in the tasting of baby food (he was smiling the whole time!), but she also thought his swallow sounded very deliberate and long as though he is having a difficult time. Additionally his O2 needs increased yesterday, which may/may not be a total coincidence.

Today's test is very important and hopefully we get some good news!

CLINIC UPDATE

Someone asked me yesterday how the clinics went last week and I realized I never posted an update. Sorry! The majority of the news was great (especially about the meds!!!)...but the ears are presenting some issues. Here are the highlights:

EARS
Many CHARGE kiddos have issues with extra fluid in their ear due to malformations throughout the ear canal. I have been very concerned with this (Max's MRI did show malformation throughout the inner and middle ear) and constantly am asking the doctors to double check his ears. Sure enough, the ENT checked and this time there is definitely fluid. This causes additional temporary hearing loss and can cause damage to the ear if untreated for a long period of time.

Since this is the first time they have detected fluid, we are going to wait on any surgicial intervention and check again in a few months. Usually this is a fairly simple procedure, however the decision is a little more complicated with Maxwell. If we decide to move forward with tubes, there could end up being a problem with excess discharge which would impact his ability to wear his hearing aides. Usually there is only a 2-3% chance of this, but because of his "craniofacial differences", the likelihood is much higher.

AUDIOLOGY
We got the newest set of ear molds and his own personal hearing aides. They too are at a lost on how to keep the aides in his ears better. We are just hoping this improves as his head control increases.

NOSE
This is an area that we are pretty fortunate. The nose has remained open, which is incredible. One nare appears to be slightly narrowing and we are just going to keep an eye on it for now to make sure it doesn't narrow any further. Hopefully it would not result in a trip to the OR, just a dilation during a outpatient visit. While it is a very painful procedure, he can be sedated and hopefully sent home the same day.

The other issue is keeping his nose clear...frustrating. (But I try not to complain, because we are so lucky that his nose is staying pretty much open. Some kiddos require 10 operations to finally get it right...so far we have only had three, but then again he is only eight months old!!!)

I am putting a call into ENT this morning to see what they suggest about his nose secretions. His O2 canula dries out his nose and makes his nose and "secretions" (aka snot) very very dry and sensitive. He doesn't get runny noses, it just stays in there so I have to suction him frequently...but it never really works that well because everything is so dry. We use nasal spray throughout the day (which Max despises) and several humidifiers to keep everything as moist as possible.

MEDICINES
Yay!!! This is very, very exciting news. There has been talk for the past month about possibly taking off some his meds and so this week we are in the trial process. Cardiology and pulmonology agreed to try him off one of his major diuretics which lets us also take off potassium and calcium. We did a blood test yesterday at the hospital and will have results today to see if his electrolytes are balanced and we can proceed without the meds. Max gets his blood drawn about every other week and it is never fun. His veins are very small and fragile and it always takes numerous attempts and usually doesn't work. They typically end up doing a heel poke and just force the blood out. Yesterday we were in "the chair" for over an hour while they tried everything. I hold him, they poke him, and he cries. Oh how he cries...very very sad. Fortunately he gets over it fairly soon afterwards. He's one tough guy.

All in all, a pretty good day at Children's. We will possibly be making another trip later this week for a swallow study. I promise to keep you posted! :)

DEVELOPMENT / HEARING UPDATE

This morning we met with the speech therapy team for the first time. I was sooo excited to share the good news with them about Max's oral progress. They too were thrilled! They encouraged me to continue trying different textures, toys, tastes, etc. (I of course have already run to the store and bought a bunch of new toys and foods!!! So fun to do that!!!) The next step is to order a swallow study to see how much we can push Maxwell with food and liquid. However, first he has to be able to swallow 10 cc's and we are definitely not there yet.

So while the session was great because of that, we also discussed at length his communication skills. And after our "interview", they classified Maxwell as "severely delayed" in this area. While I know he is far behind, it always hits you in the gut to hear such a classification. But I am definitely getting a thicker skin because it used to REALLY bother me, now I just nod and say yes, I know we have a lot of ground to cover...we are going as fast as we can! :) And then I always point out all the amazing progress he has made already!

I am really going to put a lot more focus into Max's hearing and communication. We have tried but it is really hard with the other issues going on too. He has a significant hearing loss (severe in one ear and moderate in the other) which is one of the main reasons for his "severe delay." He has hearing aides, however aides are not easy with a baby with weak muscle control. He cannot sit up yet and therefore his aides easily get knocked out of place when his heads move from side to side. And then all he hears is a buzzing sound...not pleasant. Additionally, his "funky monkey" ear doesn't have much good cartilage to it so it barely holds the aide in even if he is sitting still. And of course the inevitable...Max has learned how to take out his own aides!!! The other day was hilarious. I put his aides on and left the room for a second to grab the phone. Came back in to find Maxwell had taken his aide off (even with the tape that helps to hold it on) and he was sucking on it like a binky. Nice $3,000 toy Maxwell!

Currently we try his aides for short periods of time throughout the day, but I am really, really going to try for even more time. Not sure yet how, but we will find a way. (Hard to focus on the rolling over skill with aides on...just doesn't work!) I am hoping we can see some progress in the next month or two.

We are adding yet another specialty to Max's team....a hearing specialist who will help me learn what he can/cannot hear with/without his aides and what we can do to improve his communication. Additionally Max and I are going to start working with baby sign to give him an alternate way to communicate. Really looking forward to that...hmmm, when will we fit that into our day??? Definitely worth it though!

What is encouraging is that Max is ahead of a lot of kiddos in having his hearing loss defined and getting hearing aides. A lot of CHARGE families that I know did not learn about their child's hearing loss until 10 - 18 months old. So hopefully being "ahead of the game" will help Maxwell...and it eases my mind at least slightly.

THERAPY PAYS OFF! GREAT PROGRESS!

It is soooo wonderful and reassuring to see our dedication and intensity pay off! YAY! Max and I have been very focused on his oral therapy, and while he was making some progress, it was a little slow. And I was getting worried when we would reach a breakthrough.

As a reminder to everyone, Max only receives nutrition through his GTube and has never had anything orally. Most CHARGE kiddos have significant issues with swallowing and breathing due to a variety of reasons and some do not eat for many years. In addition to that, Max tends to breathe somewhat fast (better than before but still an issue) so he is at more risk for aspiration.

So when babies do not eat by mouth AND they are intubated for long periods of time (like Maxwell), they can develop serious oral aversion. (BIG issue when we approach eating down the road....and oral aversion is already a big issue with CHARGE kiddos b/c often they have intense issues with senses). To help with this, we have been on a fairly strict oral therapy program...different textures, techniques...anything to let him know that the mouth is a happy place and not to be afraid. I have bought a million and one gadgets and binkies to let him explore. Between therapy appointments, constant work with his mouth, and all these different gadgets, something had to click.

Well sure enough, everything "clicked," and in recent weeks Maxwell has made tremendous gains and I am absolutely thrilled...beyond words!!! GO MAX GO!!!

THUMB SUCKING
Last month he really started to explore his mouth, but just recently he actually learned how to truly suck his thumb and it is soooo incredibly sweet! He has learned to LOVE his mouth.


TOYS
AND I have been so longing for the day that Max would voluntarily put toys in his mouth...well that day is here! I AM SOOOO EXCITED!!! He shoves everything in his mouth now...literally everything and sometimes all at once!!! So funny and so absolutely adorable!!! He gets very intense and sometimes frustrated when he can't get the object in (still working on some eye and hand coordination), but he is very determined and with a little mommy help, he gets what he wants!!! He is making big progress on this every day!


BINKY
We have been working hard with him to get a "good suck" with his binky but that is really hard since so many months of the instinctual phase have passed and because of his very, very, very high palate (which makes it difficult to get a strong suction). But that too has been reached...it falls out a lot still, but he does love it when it is in and every day it seems he is doing better and better with it!!!

AND drum roll please....I am also SUPER excited because we hit a milestone this week (I think!). We meet with the Speech Therapist tomorrow morning and I am also going to put a call into his pulmonologist and I am hoping they are as thrilled as I am. What I have learned in my brief time in this role as a "special needs mom" is that sometimes you must trust your own instinct. So I did!

TASTES
On Max's eight month birthday, we went to the grocery store (yep, you read that right, Max joined me!) and picked out some yummy delicious fruity baby foods and went home and tried just the tiniest of amounts...literally like less than a pea size, but still that is a lot compared to nothing! And he really, really got into it! He especially loved playing with the spoon (as pictured here!)

We have been doing this every day since...again, just the tiniest of amounts but he really seems to be getting into it. And so am I! The first day the food got all over my shirt and I was sooo proud. Felt like such a badge of honor for a mom! (Didn't even change my shirt until the next day b/c I was so happy about it!!!) We have waited EIGHT months and to even have baby food in my cupboard is thrilling!!! :) This lil' guy amazes me each and every day!!!

Pretty amazing, isn't it? He is 100% incredible! He fights hard each and every day to get strong and make progress developmentally. Thank you everyone for your continued prayers...the support nationwide continues to be overwhelming and heartwarming! :)