Friday, December 16, 2011

26 months

Gabby helping decorate the tree!

Thanksgiving, playing with warm marshmallows, wouldnt eat it but loved playing!
So havent been on here in a while. Not to much has changed. Gabby went to the pulmonologist, lungs sounded good, he just had aspiration pneumonia. He's been having cronic ear infections, 7 in 3 months to be exact. He will be getting tubes in Jan. Seems there really in a hurry makin him wait 6 weeks. The last video swallow was not so good, hes aspirating all consistancys. So every video swallow has gotton worse, this really concerns me. I dont know what to think half the time. Is my son terminal, or will he just keep truckin on in life just really behind. He still is unable to sit, or push up on his belly, no coordination in the gait trainer, feet go which ever way, he doesnt tolerate being upright very long, he starts to cry. His scoliosis is getting much worse. I filled out an application for shriners last night, I need to make copys of his medical records and send it in. His orthopedic said the scoliosis went from 27deg to 49deg (if I remember correctly) in 7 months, so he's to follow up in 6 months, and talkin about surgery. I really would like to avoid this if at all possible. That is why his ped asked me to contact shriners. My friend Jaime just got news of her little girl having mitochondrial disorder. This makes me start thinkin. Gabby has labs peding, so I call genetics to see if there back and what the labs were.. They are not back yet and its for mitochondrial disease. I havent been feelin myself latly. Wanting to start school in april and christmas is right around the corner. I have a Girls only vacation in Jan, cant wait, just hopin my Gabby baby will be A-ok while im gone for 5 days. Anyways just venting. The MRI is scheduled for Dec 28th, and the labs should be back before then. I will update once I get the results.

Saturday, August 27, 2011

Wheel chair has arrived!

We got Gabriel's wheel chair about a week and a half ago. I was feeling really weird about taking him in public. What if someone asked whats wrong with him.. Well my older kids were more than excited to try it out. So the first time we went shopping the kids wanted to push Gabriel. Man did Gabriel and the kids have a blast. I was worried my 9 yr old Jeremy was gonna run off with him lol. Gabriel really loves sitting upright, im sure this much feel so much better than slouching in the stroller. And really help his scoliosis. His wheel chair also came with a tray, this is super awesome cause we can use it as a seat in the house instead of the high chair. I love how it reclines too. The only bad thing is that his arms hang back when hes relined, so I'm going to make a pillow to put by both arm rests to keep this from happening. I also wanted a canopy but apparently they don't make these. Its so hot in Florida and I want him to have some shade when were outside. This brings me to my home depot story...

Gabriel getting casted for new AFO (leg braces)

So we went to home depot to look for something to build a canopy for the wheel chair. The lady to the right really was trying to help me so bad. We were walking all over the store looking for something to build this. We just about gave up and I was going to go to the fabric store, she came back with 2 hose tips that adjust, just like the pieces on the side of stroller canopy's that allow you to open and close and it stays in position (dont know if your following me lol), anyways, she said they were 15$ each but was quick to say how about if we just give them to you. I thought she was kidding, nope she was serious. So a couple other employees came over, they were interested in giving me ideas to build this canopy. So we brought the wheel chair in from the truck and sized up the parts we needed. One of the managers even offered to build it for me, lol Im a little to anal for that. But that was an awesome offer! So we got all the parts we need, get to the register and they ring it up... Umm they said they wanted to donate everything, the only thing I would have to bring Gabby and the wheel chair back in when I'm finished. Ya know I love to show off my work, so of course I was super excited they donated a good 50$ worth of stuff! So it only took me 2 days to do this, a few trial and errors but I got it together and it looks great, and is totally removable like it was never there. My plan was to sew a canopy out of fabric with cars on it, but the canopy looked horrible. Then I remembered I had an extra canopy piece that is suppose to attach to an existing canopy of a stroller to make it bigger. So this ended up working perfect and matches like it came with the wheelchair. So today I wrote a thank you note and printed pictures of the wheelchair before and after. Gabby and I went to home depot to show it off! Only 2 of the employees were there that helped me the other day. They were so excited to see Gabriel and very impressed! They told me that the store manager has a daughter with a traumatic brain injury, and is in a wheelchair, this is why she wanted to donate all this for Gabriel, they said her heart melted when they seen Gabriel!!! This experience so made my day, week, month...! There really are good people out there, don't waste time looking for them, they will find you! What comes around goes around, I love to bless people and get blessed too. Life is soooo Good!

Friday, July 15, 2011

21 months old! Wheel chair fitting

My little man is now 21 months, today we went for a wheel chair fitting.. Bitter sweet. I know he needs better support than a stroller, he always scoots his butt down then his lower back doesn't touch the stroller, its just not good for his scoliosis. So I was thinking that it would look more like a stroller than a wheelchair. I was wrong. Don't know why its bothering me, but I just feel like when he gets the wheel chair and use it in public its gonna scream "look at me" and then people will wonder why is this little guy in a wheel chair.. I don't know maybe its a reality check that my son has delays and dare I say disabled or handicap. Its just really hitting home that he's not going to out grow this, like so many well meaning people have said to me since he was an infant. I got a comment the last week from a women in a store, she was talking to Gabriel and said " wow look at those thighs, he should be pushing the stroller not in it!" so it sorta pissed me off, don't know why and I said "he cant walk he has a muscle disease" lol for some reason it made me feel better like I was sticking up for my lil man! But then the lady kept on and was saying that she would pray for him.. I know she didn't know anything was wrong with him by him just sitting in the stroller, but the comments are bothering me. If im walking and holding Gabriel, if someone doesn't see his face that hes awake they say, "awww out like a light" or "how cute hes sleeping, or so relaxed" then they realize hes awake and they just look at me weird.. While I'm on a roll, It also really bothers me when people put their 2cents, 3cents, 4cents... in, like asking me all kinds of questions like did you have this test, or this therapy, or blah blah blah..

Guess I'm venting a bit, its been a stressful past month.. But Gabriel is doing good (knock on wood), hes a happy chubby little guy and just an absolute joy. I thank god that although he has poor muscle tone, he doesn't seem to have any other issues, like with his organs and such. Feeding is also getting better, hes more willing to try new foods, though he doesn't eat much of it, he is trying, so for this I'm very happy!
BTW the wheel chair will take about 4-8wks to get, maybe I will be more prepared for it by the time  it arrives..

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Friday, May 20, 2011

nephrology appointment

Today we seen the nephrologist to see if they could give us an answer as to why Gabriel has been urinating white sediment. Over the past 3 months or so it has become very apparent. I have been finding white stuff dried to his skin when I change his diaper. He does this several times a week. Sometimes its so much I can flake it off his skin. I saved some to show the dr.
She told me that sometimes this can be normal to urinate crystals, but she would need to analyze his urine to see if this is crystals or stones or uric acid.. So she sent us home with an urine collection kit, I will collect Sunday night then send to the lab Monday. We will also be sending the white stuff I collected off his skin. She said the results would take about a week, but believe me I will not be holding my breath. According to what she finds will determine the next step, which would probably be a renal ultrasound.
I'll try to keep posting as new results come in.

Diagnosis still pending...

Yesterday I got a call from the neuro's office, the nurse told me his biopsy came back and hes negative for myotonic dystrophy. This is a type of congenital myopathy the dr thought he may have. I was confused. I told the nurse that the biopsy was pending the mitochondrial test not the myotonic dystrophy, that this was a blood test. She told me no, that the myotonic dystrophy test was with the biopsy. Then after I still questioned this, and asked what the result of the mito test was, she said she would check and call me back..
So the nurse called back in about 10 minutes, hmm, I was right (as usual lol). The myotonic dystrophy was the blood test, she said that this is negitive, and she found the finalized results of the muscle biopsy and the results for the mitochondrial test was back. She said she would have to talk it over with the dr before she could give me the results. Of course the dr is in surgery all day so she would have to call me back tomorrow.
I asked if she could just read me the results from the report, she wouldn't have to explain what they mean. So said sorry she couldn't.. So I anxiously awaited for her to call today. I decided to give her a call at 2:32pm, guess what the freakin answering service picked up, the office closes at 2:30pm! I was so upset to say the least. So I tried a last ditch effort and call the general ped office, talked with the nurse, she was sorry to say that there access to the All Children's website would be down until Monday afternoon.

So you know I'm going to be calling bright and early Monday to get some answers.. Just a hunch, but I'm guessing he does have the mitochondrial related congenital myopathy since the nurse was so adamant she had to the Dr before giving me the results..

And so the wait continues...

clap clap clap your hands!

Little man has learned how to clap in the last few weeks and boy does he like to show it off! I'm so proud every time he learns something new, its so exciting. I never would have thought that each milestone that baby's reach would be so exciting and anxiously anticipated. With my other 3 children each milestone was reached right on time, like textbook. I guess we just take all these little things for granted. Gabriel has helped me realize we need to take a step back and be patient, each child is different and will reach there milestones when there good and ready.. Of course  a little therapy doesn't hurt, lol.
Another thing I noticed is that now he is getting better at putting his binki in his mouth, I was really wondering how he did it.. For instance, he would be laying in the bed, binki near by, but not in his mouth. So I watched how he did it one day. He would randomly pick it up, put it to his mouth, and like the first 20 times he would have it the wrong way, so he would bang the plastic back to his teeth, realize its not right, drop it down on the bed and pick it back up and put it to his mouth. He would do this repeatedly until he got it right! You could see how proud he was, he will chew the binki back and forth and smile to show off like "Look Mama look what I can do!". He is was patient little man, rarely gets frustrated when he is doing things himself, like playing with toys. But I you try to make him do something, oh man does he get mad, and he'll let you know it lol!
Heres a link to the you tube video of him clapping, so cute!

Wednesday, May 4, 2011

New benik vest

Finally got his vest to help his posture, and got the shorts to go with, this will help him from keeping his legs wide open, and he got the soft splints....  love them all! He seems to enjoy them too! He's got the best therapists around, I always look forward to wed, his therapy day!