Stephen Fox

Born: July 1, 2006  

Santa Fe Springs, California (CA)

"Our son Stephen is the Joy in our would and he is perfect in our eyes and we would not give up any of this experience easy or hard for anything on this earth, like all of our children he is a blessing to us and our family and we are honored to be in his life!"

Update 7-2-08

Stephen turned 2 years old yesterday and since according to the doctors it was not an event we were expected to share we really felt we reached a milestone and with GODS help we expect to share many more.

Stephen is doing great, getting bigger and heavy but I'm not complaining. Since the G Tube was placed in March he gained 8 lbs and some muscle. He is doing so well the doctors are scheduling a few surgeries that previously have been put off.

He has finally developed a sleep schedule and its going good. He definitely has a strong personality, very spoiled and he is becoming more vocal, and we are loving every grunt and yell.

Thanks,
Steve,Valerie and the Kidos

Update 4-4-08

Hello All,

I'm glad to report Stephen is doing well. He is now 21 months old, it seem to have flew by. We did discover Stephen has urinary reflux to his kidneys with some cyst but again with the help of the great team of doctor's and nurses we seen during our last admit in March we were able to control it before it caused anymore problems. Stephen did receive the G Tube and with the exception of some development of granunolma tissue which is scheduled to be removed everything has went very smoothly. I do have to admit I was kinda scared when they first told me he was a candidate for the G Tube. I had many questions and misconceptions. I was not sure if I could handle this, imagine I was worrying about myself when after all this was happen to Stephen and of course he took it like a champ and I took it like a crazy lady, over thinking everything but once I realized it was just another step in making my little one safer it all feel into place. He did not miss a laugh or smile and that made me okay. Plus I have a purchased a large bubble and put him in it, from the "protect my baby store in my head" which has helped!

He is steadily making progress in his development and of course till he is able to get the button feeding tube I have not let him have too much tummy time which I have been assured by his therapist would not hurt him if he did roll over but this is me we are talking about. I'm very excited to report my mister has been heard trying to say mom, dad says it sound more like mmmmmmm but don't listen to him!

Thanks,
Valerie, Stephen and the Kidos
 

1/29/08
Stephen is doing really well, He is 18 mo now and is 24 lbs, he was the lucky recipient of a new virus called HMVP, flu and another bout with pneumonia a week or so ago but as always he came thur like a champ with the help from those much needed and appreciated nurses. I really think the family is more affected by all his symptoms then he is.

'm starting to believe my little stinkers condition is meant to put us, his family in check, he does keep us on our toes and I have yet to see a bigger example of Grace and Mercy. We were able to see a wonderful very helpful nutritionist and she gave me some great ideas, recipes, and suggestions for my Stephen and along with her efforts to get me a standing order for pedisure he is steadily gaining the weight he needed. Stephen is schedule for a series of swallow tests to determine if he is a candidate for a G-Tube for feedings which according to all the doctors is a normal progression of his condition but as Stephen has done before he might prove the doctors wrong. His last appointment with the cardiologist went well the report was good his heart conditions are all still the same but no progression and he was given the okay for ear tubes which also went very well. Our family really thinks his hearing has improved he has even been startled which had never happen before.

His seizures are totally under control while his sleep habits are still left to be desired. My mister did have a hard time of teething, since he is on a puree diet because of his cleft pallet he was not getting any help with cutting his teeth so he was not a happy camper but with the help of the finger tooth brush and a lot of him biting our fingers he seemed to have got the job done.

I'm still trying to get better interpretation of his MRI, regarding his cranial fusion and some other facial structural issues but its kinda like pulling teeth to get a answer I can understand. He has physical therapy and vision stimulation therapy twice a week and I could not have asked for better therapist , they have made so much progress with him.

Stephen is trying to sit up like a big boy and I would not doubt it if it happens soon, his head control has improved greatly and how he loves his rough play will dad and his sisters. I'm grateful for this good report and hope to post many more.

Fox Family
Stephen, Valerie and kidos
 

11-19-07

Overall he is doing good. He had a few stays in the hospital for pneumonia due to the left ventricle non compaction but with antibiotics it cleared quickly. He has physical and vision stimulation therapy three times a week. He is 16 months old now and according to tests is developing in the range of a 1-3 month old. He has not yet mastered the roll, holding his head up or sitting but he does like tummy time and he loves kicking his feet he is very ticklish. He laughs and plays all day, no question he is a very happy baby. He does have constant ear infections and his sleep habits are still not that great but we manage fine. His cardiologist still has not approved the ear tubes, hernia repair, soft pallet repair or extra digit removal due to his fear of his heart condition.

He still eats from the Haberman bottles, I just puree all his meals. He's 22lbs he has not gain weight since April 07 but has not lost any either. I'm trying to see a nutritionist and get a GI appointment but their is a big wait list here at Children's Miller in Long Beach that's where he gets his care. Despite the wait for an appointment the doctors have all been great.

His eye sight is still poor to none but he does keep his eyes open most of his waking hours and he responds to light, if you take him where sun shines he starts to laugh hysterically its beautiful to watch. His hearing has not been officially tested since he does not sleep long enough during the day for anyone to test him, but we have determined he responds to very deep sounds I believe my family has adjusted very well and we all feel we communicate with him well, my 6 year old has discovered if you bark at him he laughs uncontrollably so that's are thing our whole family barks like a dog and he loves it.

I’m sure like every other parent on this site our son Stephen is the Joy in our would and he is perfect in our eyes and we would not give up any of this experience easy or hard for anything on this earth, like all of our children he is a blessing to us and our family and we are honored to be in his life!

Valerie Fox

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August 31, 2006

Our names are Valerie and Steve Fox from Santa Fe Springs, Ca our son is Stephen Fox he was born 7/1/06, 8lbs 4oz, 21inches.
  
He was born with an extra digit on both hands, cleft pallet, umbilical hernia a few sores which have healed on his head and deep-set eye which he has not yet been able to open
  
He was observed in the NICU for 7 days he did have a G-tube in place but after a few day he was able to feed from a special nipple so after talking to the doctors we decided to take him home and remove the G-tube.
  
The hospital has placed him on hospice at home, he is now 2 months, and 11lbs and feeding very well (thank God) since the doctors told us he would not be able to feed.
  
He has conjunctivitis and makes a loud noise while he sleeps like a snoring noise he is showing no other signs of his diagnosis of trisomy 13 and since our Doctors don’t seem to know much about trisomy 13 we not sure what we should be looking out for.
  
I guess I’m just trying to find other parents in similar situations.

Valerie and Steve Fox
vdotfox@yahoo.com