Muscle Biopsy part 2

Gabriel had his muscle biopsy 2 days ago. Everything when as good as can be expected. He woke up from anesthesia fast, wanted his "Mama" and the nurse said he was yelling mamma for me. How I love my sweet man! The surgeon cut out a dinosaur shaped bandage for him, said to keep it on for 2 days. I took it off today, the site looked great, has 4 steri strips and the skin looked closed and no sign of infection (fingers and toes crossed). Only needed tylenol for the first 24 hours. He has been eating extremely well too! Yesterday and today he has taken his 2 day time feeds by mouth, and just the tube feed at night.

So the wait is on..Doctor said it would take a week or two to get the results.. Although I don't want anything wrong with my baby, I know there is, and I just want some answers, I really hope the biopsy can lead us in the right direction..

USF physical therapy

Gabriel's got to be the little example at USF's physical therapy class, two days ago. Im so proud of my lil man, he's such a show off! His PT at all children's asked us if she could use him as an example, Im so into teaching, so of course I volunteered him. She showed the students his braces, him in his gait trainer, a vest that I dont remember the name, and had him on the mat. Gabriel fought as usual when she tried to move him side to side or sit propped. But when she stopped Gabriel was rolling side to side reaching for his favorite ball, it was pretty funny. The instructor gave Gabriel a really neat looking globe that has bright lights inside that spin, he was totally mesmerized and stared with amazement and tried to eat it. It also has a handle and vibrates, I think he likes this on his mouth cause he's teething.
I brought my gang with me, and they got to stay in a classroom next door and watch a movie and write on the white board. Its spring break so they didn't want to stay home, I don't blame them..
Just wanted to share our special day.

Pitty Party!

On our way back from All Childrens today I stopped at baby-r-us to see if they had any cute onesies in 24 month size. I love the onesie cause it keeps his shirt down and he cant mess with his mic-key button. As im shopping this lady starts talking to Gabriel, and asks my opinion on a towel set she is buying for someone off there baby registry. Gabriel looks at her so shy, and smiles, he is in the infant seat of the shopping cart since he cant sit yet, and the lady was saying oh hes probably around her granddaughters age, but he looks bigger. I asked how old is her grandaughter, she said 4 months! 4 MONTHS im thinking, holey cow, how could this lady think hes 4 months! Well of course she asked how old, 17months I say, then she just seems a little shocked and didn't really say anything else about baby's and said well I think I found what im looking for, have a nice day.... I walk the store to the toys and bikes, this little girls, looks about Gabriel's size is running around checking out those cute comfy baby recliners that look like mini adult chairs. I was looking at the neat baby bike that looks almost exactly like the one we bought Gabriel for christmas, it has 5 point harness and all. But the one at the store had a nice cushiony fabric cover, I thought, wow maybe I could make this for his bike, I take the bike off the shelf to inspect it closer. I try to put Gabriel in it, it was so hard to get his chubby legs in the right area, and his floppy heavy body made it very difficult. The little girl wasnt really paying much attention to the chair anymore, she wanted the bike now. She was so cute, I asked her mom how old she is, she said  almost 12 months.... I don't know why all this is starting to bother me so much now, but it is!

When Gabriel was 6 months old and floppy and unable to sit, and under weight, and aspirating...I would always get "he'll grow out of it, he's a late bloomer". Now I don't get these comments anymore, its too apparent that this is not true. I accept him exactly how he is, I cant express how much I love him, I just wish people can see what I see in him, and I wish I didn't have to explain ten million times what is wrong with him, why I dont have a diagnosis, and then the person give me there well meaned two cents... I guess im getting exhausted..

I have to say I dont cry much, but I did cry today after I left babys-r-us..This is not the life I expected, this is not the life I planned, but im so fortunate Gabriel is my son, and he choose me to be his Mommy..

muscle biopsy

Today we had the appointment with the surgeon, to schedule Gabriels muscle biopsy. This is the last of testing the genetic and neuro doctors are planning on ordering. So frustrating! Feels like there giving up, like oh well, we cant figure this out, time to move on. But im not giving up on my quest to get a diagnosis for my little prince. So next wed he will have the muscle biopsy as an one day procedure at all childrens hospital. Im hoping to get the results in about a week. Then if it shows something, I guess thats good, so we know what direction to move into, but if its negative I want to take him to the genetic specialist at USF. I want  a second opinion.

While I was at All Childrens today I decided to pick up copies of labs from when Gariel was in the hospital with the abcess last month. Cause they did a urine look for cystine to check for hypotonia cystinuria syndrome. My great and wonderful friend Kelly researched this and found that Gabriel has almost all the symptoms. I looked up this disorder too, and couldnt find too much about it. Its a very rare disorder, but worth looking into. I was told by the ped that Gabriels urine was not consistent with the disorder. But I looked at the lab results and Gabriel does have cystine in his urine, but hardly elevated. Reference range is 0.03-0.15, and Gabriels was 0.16, im not sure how high it needs to be to be a positive for the disorder, but I definitely think it should be rechecked with a strieght cath or 24 hour urine. This is something I will be bringing up after the muscle biopsy. Another thing, that may or may not matter is that in every urine Gabriel has had done, there has been amorphous crystals in his urine..The docs say that this is normal, im just say'n.

To top everything off, my little mans scoliosis is getting worse, I dont even like to look at his back with his shirt off, it scares me too much! We have his first appointment with ortho in 2 weeks, we'll see if he needs a brace or a wheelchair, or what we need to do so this wont get worse..

Skype!

Gabby got to finally meet his little girlfriend Madilyn on skype yesterday. Its so funny how we planned many times to meet on skype and life happens, but yesterday it was just a coincidence we were both on at the same time.. The first attempt was at Angies moms house and Gabriel wanted nothing to do with it, because we were in her brothers room that has huge animal heads mounted on the wall. Gabriel just kept looking at them and crying, poor kid! Anyways, so i'd like to say I love skype and am surprised I havent be on it a long time ago. This is the closest to meeting in reality we may ever come, cause they live in Utah and were in Florida. Madilyn is alot like Gabriel, with the hypotonia and development, her mommy Jaime found us on youtube because of all the videos I have of Gabriel. Im so glad she found us! Its so nice to be able to talk with her, its so nice that we can share experiences, and its so nice to have someone to relate with, its just so nice...

Busy Day!!

So many people have asked me, Erin I don't know how you do it!? Well this is my answer as to how I do it. LOL enjoy!
What a day! I will list the sequence of events..
630am get up to pick up my friends kids, my turn to babysit
715am back home
815-930am dr appointment for Gabriel to check up on his abscess, its still there, still needs packing, and still has two really firm areas, that possibly needs draining.
1010am arrive 10 mins late for a playgroup for kids that have disabilities, it was the first time going, it was at a private gymnasium, the kids absolutely loved it! They were sweating and asking for water when they were done, and as in kids I mean my 3yr old son, 3yr old nephew and almost 3yr old & 15month old friends kids, Gabby enjoyed watching the kids play, and laughing, he also enjoyed when they blew bubbles with a fan, Gabriel kept trying to hit the bubbles while lying on the ground, so cute.
1200noon lunch at mcdonalds, 1.99$ happy meal day, need I say more..
0100pm driving home from mcdonalds all the kids fell asleep.
0130pm picked up my husband to sit in the truck while I go into target to get a few things
0230pm checking out at target, seen one of my great friends I haven't seen in a few weeks, made plans to go to the park later.
0300pm back at home, kids awake now, I organized some things and went through a ton of clothes to sell at Angie's moms yard sale this weekend.
0500pm at sims park, the kids favorite, got a few more kids in tow, my 11yr old daughter and 9yr old niece, so my 8 seater expedition was full! 5 carseats, and  a umbrella stroller in the back, but the girls really do help out alot, and this park is big, everything built from wood, soooo nice! Rachael came up with Soren a few mins after we got there. The kids had a blast!
0630pm my daughter talks us into getting icecream at the cute icecream shop  across the street, they are right on the canal and have a wonderful back yard with tables and chairs, and a dock.
0700pm packing up to drive home, kids got school tomorrow and haven't even had dinner before there icecream. My friends husband just got his kids once we were done with the icecream. Noticed my friend Racheal left her cup in the stroller, so I stopped by her house to drop it off, she lives a few blocks from the park. My daughter was running the cup to the door, guess Racheal didn't hear her knock, cause her son Soren answered the door, then the dog came running and barking at Elizabeth, she screamed the loudest blood curdling scream! As the dog stood there laughing, im pretty sure her dog was laughing! and waggin her tail! So after all this, Rachael and I shoot the shit for another 30 mins,..
0745pm Home, dinner was ready, fed the kids quick, then baths..
0900pm Finally check my FB page!!
0940pm scarred the bajesus out of Gabriel, him and I were at the computer and apparently I choked on my own saliva, and started to cough like crazy, he started crying and yelling, sounded like his scared cry, poor kid.
0957pm still sitting here at the computer Gabriel sitting on my lap sleeping, hoping to skype for the first time, with my friend Jamie, her little girl is special just like my little boy! I was hoping Gabriel would be awake, but im not going to wake him, but I cant guarantee I wont cough! LOL

1000pm Good night!