Email: plong412@comcast.net

4-24-08

Miss Maddy has had a rough year, she spent alot of time in the hospital. the whole month of Feb.. She had the flu in January and it just got ugly from their. She was on a ventilator for a little while ( boy was I scared) and was in the icu for awhile. well she now has a feeding tube, guess she put it off long enough.

From her being sick all year, she lost a lot of weight and strength. We say she got more strength now lol. she is starting to gain weight, its a slow process. we had to adjust her feeds a couple times. We all hope and pray it gets better from here.

with love

Patti
 
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Miss Maddy is doing pretty good, she still has having seizures almost daily, but not as severe. We still have hope that the vns will start to kick in more, fingers crossed.

Maddy is doing great at school in her walker (bronco) her nurse said if he tries to encourage her she does less, but if left alone she goes, typical kid.

Well Maddy is a big sister again, her brother Dylan was born on 2/19/07, and boy she loves him. Its real cute when Dylan cries, Maddy cracks up. So at times I take him by her when he is being fussy, and I feel bad he is crying, but at the same time its cute because she is laughing.

Maddy got sick after the baby was born, she almost had a feeding tube placed. We had the surgery scheduled, and that day Maddy spiked a temp, so we had to cancel the surgery. And since that day, she has been eating great.

Maddy drinks only neutrem jr with fiber, she is not allowed anything else per doctors orders. before the surgery date i could only get her to drink 4 cans a day, now she takes 6 or 7 daily. Its almost like she said ha ha I didn't want that tube again. So as long as she continues to gain weight the doctors are leaving it be.

I'm sorry I don't get more involved on here, but with 4 kids and one who lives on the computer I don't have time, but you all are in my prayers daily,

Patti and Miss Maddy

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4-21-06

Maddy was born on 1-30-1997 in a Pittsburgh Hospital. I had a normal pregnancy except for having a 2 vessel umbilical cord.  The doctors told me it may cause Spina-bifada.  I had numerous tests and all came back good.  

Maddy was diagnosed on the day of her birth with mosaic trisomy 13.   All they told me was to take her home,  atke pictures and plan a funeral.  (Wish They Could See Her Now) The first three years was rough.  Maddy battled RSV, UTI'S , Urine reflux, Malrotation Surgery, Pancreatitus, Acid reflux, Gallstones, Teatherol spine, Cataract Surgery, Ear and Eye Infections.

When Maddy had her Malrotation surgery she also had her gallbladder removed. Maddy was good for almost two and a half years (no hospital stays, just your typical child hood colds). Then the seizures started, she has grandmal seizures along with apna seizures.  Maddy has been on several different meds for them, none of which we noticed any changes.

In November of 2005  Maddy had a VNS implanted (Vegal Nerre Stimulater) she still has several almost daily, but we have hope. the doctors say it could take awhile before we notice a change. We are all hoping it helps. We have the greatest nurse that watches Maddy at night so we can get some sleep. Also a great nurse that goes to school with Maddy at the WPSFBC (Western Pennsylvania School For Blind Children).  We Thank them for the LOVE they have for Maddy, We're all a team.  

Besides the seizures , Maddy is the most happiest little girl you could ever see.  Her smile brightens up every day!!!