17months old (13mos adjusted)...Big update!

I have not posted in a little over 3 months and I really don't know why. Lots have gone on and lots of things have changed. But I have been feeling a bit down and out and even more exhausted than usual so I have not been able to bring myself to post anything.

Since my last post Ayden has been battling lots of different things of his own.

CP CLINIC & Therapies:
He was officially diagnosed with Cerebral Palsy...Spastic Diplegia to be exact. Since the diagnosis we have been focusing a lot more intensely on Pt&Ot. He has each of those therapies twice a week.

He began sitting up by himself for longer periods of time in October just in time to get some really cute Halloween pictures in his froggy costume I made him :-D

Eyes/Vision:
He has also had 3 eye surgeries since the last post as well. He is now only using his right eye in spite of all of the difficulties he has had with it. During his last eye procedures Dr. Trese had to separate the iris and cornea because it had begun to fuse together. The had to cut slits in his pupil to give him a greater chance for it to begin to dilate again. He has his 2nd vitrectomy in this eye as well as had to be injected with a thickening gel. His lens in his right eye also had to be removed. We are still waiting for a false lens to be fitted and placed in this eye. Meanwhile, the left eye has stopped functioning once again. This is the eye that had glaucoma and a cataract for over a year now. During his last exam on this eye the glaucoma has damaged the eye so much that it has now developed hypotony and is beginning to shrink. He is on numerous drops to try to increase the pressures again but if it continues on this track, the eye will need to be removed completely. For now the pupil isn't dilating and he does not open this eye very much. We will be making another trip(or 2) to Michigan for the procedures on this eye sometime before spring as well. He goes in for another EUA at Dayton with his normal Optho on January 20th. Hoping they will schedule his lens fitting then. He had to sit up for 6 weeks straight after his surgeries, he hated sleeping like this!

GI:
He has also been having one belly issue after another. He has had a positive c-diff since beginning his chemo treatments. Constant loose stools and puking due to this has forced us to stop doing bolus feedings. He is now on continuous feeds for 19-20 hours of the day and off for 4-5 hours to prevent the massive spit up that he was having before. He has been puking every time we give him his doses of prevacid each day but no reason can be found. The GI doctor who had followed Ayden since birth has now moved to another state and we were forced to see another doctor in her practice. This has not been working out, each time we go this woman asks how early he was and what surgeries he has had. And, with in the same breath suggests a fundo or a g-j tube possibly being in his future. Sorry, but for all of those changes to be made, I expect you to know my son and his specific needs not just throw these concepts at us after only seeing him twice. We are scheduled to see a new GI doctor at Nationwide Children's the middle of February. Hoping this doctor is more perceptive and insightful & we can get our little man back to baseline without another surgery!

ENT/Airway:
Since starting the chemo injections with his routine airway surgeries he has made major improvements. He is now able to go 2 months in between airway surgeries. It has now been 3 months since his last dose of chemo as well! This is a miracle in its self! We use to have to go every 2 weeks emergently! I am so thankful for the miracles the chemo has done for him! This has even made his ENT surgeon a believer!

Neuro:
He has yet to see a Neurologist either but we have finally gotten into one close by. That appointment will also be at Nationwide Children's during the month of February! Good news is that he hasn't had any seizures we have see since August!

Other Specialists:
Next week we will have our first visit with the amazing Functional Vision Specialist that we have been hearing about for the past 9 months! So excited to hear what she has to say and the feedback she gives us to help him interact with is surroundings more often. He will finally see the Pediatric Dentist next week too!

Speech/Feeding:
Speech/Feeding therapy has seemed to hit a brick wall. He has been gagging on more and more items and refuses to even do tastes of anything other than the meat baby foods. Even with this, he will only tolerate the tastes with a mesh feeder and so he does not get any substance from it. He has begun to drink his bathwater though. Which baffles me all together! So we have tried to put water in a bowl and he will suck up some water but makes a mess with it while he is at it. We are a loss when it comes to this. He is still not saying any words but he babbles vowel sounds constantly and plays with the tonality of his voice all of the time. He even laughs at himself with the sounds he makes. We have been searching for a new Speech therapist b/c our sessions just consist of us showing her what we do at home. It has been frustrating to say the least!

Aside from the strictly medical stuff:
Ayden has been making progress in a lot of different ways. He is rolling all over the living room floor to get to places he knows his toys are. He has finally begun to weight bare in the quad position. He babbles like crazy. Shakes his head when we say no. He bounces up and down when we say "giddy up horse giddy up" when he is on your lap/knee. And he gives kisses on cue.

We had a great Christmas & New Years with our little man too!...Look how precious he is in his Christmas pics!
This was our Christmas card that we sent out this year.
Hes still too small for some of his toys/presents but he loves them all the same. Look how proud he seems of himself!


Height/Weight Update:
Ayden is now 23lb 8ox & 31.25in long. That puts him in the 95 percentile for his weight,and 93percentile in height for his adjusted age!...He is in the 25 percentile for his real age in both! He is getting huge & has come so far! I love him so much!

58 Weeks Old...Airway, Eyes and Teeth!

So since my last post Ayden has had eye and Airway surgery.

The eye surgery was a stribismus surgery to see if they could relax the muscles in the eyes enough to not cross so much. We saw results within the first week but things are slowly going back to how they were. Bummer!

Our Optho doesnt seem to be keeping a close enough eye on Aydens case either. Every time we have gone to see him he asks when we will be going back up to Michigan. We have asked for a prescription renewal for his eye drops and he just says to tell the nurse to do it for us. Well evidently they dont look at his chart either, and only gives us a prescription for one of the eye drops and doesnt allow for any refills. And even thought I have called like a billion times I never get a call back. Just to fill you in a bit on Aydens daily eye drops. He is on Cyclogyl to dialate and stimulate the eyes to keep them active, and he is on Trusopt for the Glaucoma. I dont know what else to do! So we have scheduled to go back to Michigan for an exam under Anesthesia. Since our Optho seems clueless and says that he can not see into Aydens right eye at all, we are hoping Dr. Trese will have abit more insight for us since he has not seen Ayden since the 1st week of December. Hoping another vitrectomy isnt involved but at least we will be a bit more informed!

Our trip to Michigan is on October 11th and now we are starting to worry as to how we will get him there and if we can afford it. Our local family services agency has been helping us with gas cards since my husband lost his job 3 and a half months ago but we have almost reached our limit for the year already. And if we have to stay overnight we have no way of affording a room close to the hospital. I feel soo helpless, I hope we can figure things out soon!

Here is Ayden chewin on his toes the day after his eye surgery. Silly boy cant get enough of them!

Anyways,
His last Airway procedure was the longest stent of time between procedures we had had since March and were quite nervous to see the results. The chemo injections are working wonders and we are able to keep on the every 3 week track and may even be able to go to only once a month if things continue at the rate they are going at this point!

On another note!...Ayden now has 6 teeth! I cant believe how fast they are coming in! He didnt get his 1st tooth until July and now 2 months later he has 6 teeth!...They are very green/yellow and one is coming in completely sideways though :-(. Upon our last trip to Dayton Childrens we stopped by the Pediatric Dentist's Office to see what process we needed to take to get him seen and they told me that they were not accepting new patients until January! Im hoping they can get him in immediately at that point but things dont look very hopeful for him getting seen even in the next 6 months!

Happy Boy sitting in his Toy Story chair

Oral Feedings are still non existant but we have a swallow study tomorrow!

Weight wise he is slowing down a lot and actually lost weight for about a week or so. After losing and gaining it back he is now back up to 18lb 8 oz. It seems like a lot but we are being pulled in too many direactions. For his age and development he is on track with weight. But, if he keeps going at the pace he is now he will not reach the 22lb mark needed to get his Mediport until after the New Year. I just dont think his veins will continue enduring the abuse until then. It took them 8 sticks to secure an IV for his last airway procedure! His poor little veins have just been used too much!

He is now being trialed off of oxygen during the day and is on 1/16 liter when needed and at night time!

Lookin grumpy&sleepy in his car seat. Hes gettin so big!

Developmentaly, our Pediatrician is now saying Ayden seems to be at about a 6 month level. He is finally sitting up for longer periods of time. He has lasted over a minute several times within the last week or 2. He is showing a lot of weakness on his right side and doesnt like to move his left side as much as he should. When doing walking practices he needs a bit of nudging to his left leg in order to get him to take a step with it. He loves to be stood up though! He is going to a cerebral pausey clinic the 1st week of October & we hope to get an official diagnosis so we can get more assistance in hopes of getting him caught up.

He is such a happy guy in spite of it all though! He has begun to give kisses and even attempt yo make the "mwah" sound.. of course it just comes out as "aaahhh" but its the cutest thing ever! The first time he did it without me asking for it I bawled like a baby! He wants to kiss me all the time now & it makes me so happy! At least we know he loves his Momma! I cant wait until he says his first real word! He has been doing little things like "mm k" repatatively when hes upset for months now (you know all parents hold their baby and say "its ok, its ok" when they are crying!) and it seems like he says "I good" when hes happy and playing and "ow" when he wants us to stop doing something to him. But we may just be hearing what we want to hear you know! He has yet to say the big ones that all parents expect/want to hear "Ma-ma", "Da-da". I just cant wait!


He is so amazing. I cant believe the improvements he has made and how big he is getting! Im so proud of him!

55 Weeks old:...Chemo is helping!

This past week Ayden had his routine airway procedure and actually was given a positive outlook. I knwo its not a big change but instead of every 2 weeks, we are able to space his procedures out to every 3 weeks. We are so excited!...Since ayden was released from the hospital we have had to cope with having an abundance of appointments every other week to ensure that the week of his airway procedures has nothing scheduled after the procedure to allow for recovery time. This means one week is filled with appointments (sometimes 3 appointments in one day) and the next week is filled with preparing for the trip to Cincinatti, the stay there and the scheduling of the next weeks appointments. With this change in regimine it just may mean more time at home!

Meanwhile this week Ayden had his 12 month checkup at his pediatrician and actually had some positive news there too!... Ayden is now 18lb 2oz and 27inches long...This puts him in the 50 percentile for his weight, 25 percentile for his length and 30 percentile for his head circ. for his adjusted age!... Yay!...hes finally on the chart!..Evidently they were comparing him to babies with his actual age when they were telling me he was still too small!


The bad part of the visit was that it turned into a sick appointment and more labs were drawn and being sent for another chest xray...And to no avail!...There is no additional infection and no additional lung/pulmonary issues going on. Meanwhile he was spiking a fever between 101.5 & 102.5 for 3 days. I guess hes allowed to have a fever acroding to three different doctors!...A surprise to me!...lol...He hasnt had a fever for 36 hours now though so seems like it was just from the previous issues or from teething. Who knows?

Anyways...Since I have been slacking here is Aydens first year photos I took of him that I promissed!



He is such a ham!...I love it so much!

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!

Developmentaly:
~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

Feedings:
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.

Neuro:
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.

GI:
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).

Airway/ENT:
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!

Optho:
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& Jess...one of Aydens primaries from Dayton

And he only lasted through 2presents before he passed out
Ayden, Marley, &Dominic other lil miracle men.Ayden &Donnovan...one 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