Sunday, August 22, 2010

54 Weeks old....Sorry We have been MIA

So I know it has been 2 months since my last post...Life has really caught up to us! So in brief...Whats been going on with our little guy...

Aydens first time swimming...he seemed to enjoy himself!

Within the last 2 months Ayden has:

Gotten 2 teeth and is on the verge of a third!

~finally begun to roll over in all directions,
~scoot himself across the floor with his head and arms flat on the ground...(its pretty difficult to keep him from getting rug burn but there is no stopping him)
~beginning to weightbare on his legs and arms (he is very reluctant to use his arms though but will finally push himself up if he is layin on our chests)
~Will move his legs in a forward motion if we move his arms forward in a crawling motion
~Loves to be stood up and jumps/bounces up and down
~Is doing well with head control
~Sits great with support and is using his arms to stabilize himself when not being held
~Has sat for 45seconds unsupported (only 2 times...normally 20-30 seconds is his limit)

Still working on:
~Bringing his head up when doing tummy time
~pushing himself up when on belly
~laying hands flat when put into crawling postition
~gaining more balance and strength to sit unassisted

He still takes nothing by mouth but has been seeing a Speech Therapist once a month. We are supposed to be sent to do another swallow study done soon since his ENT seems to think that his airway should not be a factor with his feedings. He gags or pukes everytime he even gets a taste of anything. This is the second Speech therapist we have seen and both have been too scared to try anything with him and so our appointments only last 10 minutes each time. Very frustraiting to say the least.

Ayden has had only 3-4 seizures his entire life but after an EEG with no findings of epilepsy we have no answers as to why. Along with the EEG we also had a head ultrasound that showed increased amounts of fluid and enlarged ventricles. The ultrasound did not show enough and so we were sent for an MRI. The results of the MRI were good and bad. Our fears at first were that he would need a shunt but this was not the case. The enlarged ventricles turned out to be from excessive scar tissue in his brain from the previous damage from his IVH and from the cysts that were previously in his brain matter disolving and fluid remaining in the areas they once were. There is a significant amount of irreversable damage. We are relieved that he did not need another surgery but this seems quite a bit worse to us since there is no treatment to help with this. We just have to work with him as much as possible and hope that he is able to compensate for the brain damage. We have yet to see a neurologist though.

Nothing has changed. They want us to slow weight gain but I have not changed his feeding regimine in 3 months and he is still gaining weight at about 1 pound and a half or so a month. If I feed him less he acts hungry sooner & if I try a less concentrated calorie recipe he stools out too much. At this point I am sticking to my guns because I would rather him gain than lose (and his surgeon needs him to get to 10kilos before they will put his central port in).

Ayden continues to have his airway procedures every 2 weeks. But towards the end of June the lesions began to grow back more quickly and spread into other areas of the airway. Previously it had all remained in the area above the vocal cords but below the tonsels. It had now spread onto the tonsels and epiglotis and down into the trachea. To put this in perspective, only 1 in 100,000 children contract this disease and less than 5% of cases have it progress into the trachea. The fear is that it may have or will spread into the lungs (which only happens in less than 1% of cases). We were told that if the lesions spread into the lungs there is no treatment or maintenance procedure to be done and it is almost always fatal. This was a big blow after everything else that he has had to endure. We only one option at this point if we wanted to slow down the spreading of the lesions. He started a form of chemotherapy. Now after each airway shaving and dialation procedure he has chemo injections in different locations with a great amount of growth. These injections have the possibility of slowing down the disease, doing nothing at all or turning it malignant. With only a 1% chance of it turning malignant we are taking the chances and after the first dose we saw no further growth after 2 weeks in the locations of the previous injections. This wednesday will be our next airway procedure and will be our 2nd time back after a treatment...We are crossing our fingers in hopes of more good news!

Ayden's ROP has been stable as well as his glaucoma and cataract. His right eye has slowly been drifting more and more inward and when his Doc noticed this he told us to start patching his left in attempting to strengthing his right eye. After 2 weeks we saw no change in the right eye but the left had begun to drift inwards as well. At our last Optho appointment they decided that it was time to do surgery on both eyes to retract the muscles and straighten them as he said that it seems as though his brain is beginning to shut off the right eye entirely. The surgery is scheduled for September 2nd.

Other issues:
Ayden has managed to stay pretty healthy in the 4 and a half months since we have had him home inspite of his immune deficiency. After surgeries he has had to go in for additional steroid shots and a few other simple things but hadnt had any other hospital stays until this past week. The day after his last airway procedure and chemo treatment Ayden spiked a pretty high fever and was spitting up more than normal. After a trip to the pediatrician they found an ear infection and started antibiotics. The fever subsided but puking and diareah were fairly quickly to follow. After a big episode of profuse puking, another high fever and another trip to the pediatrician a couple days later things just were not improving like I had liked. I was nervous that he was getting dehydrated and I took him to the ER...They ran tests, started IV fluids and admitted him. We came to find out that the antibiotics for his ear infection had wiped out all bacteria and his bowels and a new bacteria took over. He was diagnosed with gastrointeritis and c-diff and was given a new and stronger antibiotic. After the 1st day in the hospital he started acting like himslef again...The puking stopped but the diahreah continued...The second day they were able to take him off the IV fluids and his ins and outs were stable again so they let us go home. He will be on the antibiotics and have the diareah for another 10 days. If he spikes another temp we have to rush to the ER again so hoping everything goes well for the next week and a half.
He managed to smile even though he was feeling so sick!

So...On a non medical note...
Ayden did turn 1 on August 5th..We took him to Chuck'E'Cheese and he actually seemed to enjoy himself!

Who is back there?

High five!
he liked his balloons!
And he was down for the count!

We had his birthday party on the 7th...there were about 40-50 people who attended and it was a lot of fun... but it was disfunctional to say the least...and of course that day wasnt complete without a fussy spitting up event and a trip to the ER...

Grumpy man in his high chair for the 1st time
Not Impressed with the cupcake

Ayden, Me& of Aydens primaries from Dayton

And he only lasted through 2presents before he passed out
Ayden, Marley, &Dominic other lil miracle men.Ayden & of Aydens NICU friends
Aydens g-tube popped out during the party &we had to rush to the ER in the midst of thingsAnd Happiness followed once it was back in!
But he got to see some of his favorite nurses!

He liked his new Chair & Jammies!MMMmmm I like this mom!

Overall the day was good...Even with all of the disfunction we are happy Ayden still seemed to enjoy himself!..I cant believe it has been a year already!

Here are a couple of just happy pix of Ayden from today...
he cant get enough of his feet now that he has found them!

I know this is a lot in one post but I know i have been slacking!...I will post another with the one year photos I took of him soon as well!

Weight/Length Update: 17lb 9oz & 25.5 inches long


  1. What a cute, chubby little guy! It seems like in spite of it all, he is doing well and progressing. I really hope that life settles for you guys soon - no more ER visits!

  2. You are amazing, Athena. I love that little guy. Come on, Ayden, cut down on the DRAMA, ok???? Your mama is going to be prematurely gray!