June 30, 2008- Allison was discharged on Sunday 6/29 & will have a GI follow-up tomorrow. For now we'll discontinue the 6-MP drug & continue giving Colazal (used to treat mild-moderate Ulcerative Colitis).

June 27, 2008-  Allison's Ulcerative Colitis has continued with no improvement. She's now on an immunosuppressant treatment drug (6-MP) which can cause increased vulnerability to infections, inflammation of the liver (hepatitis) and pancreas, (pancreatitis), and bone marrow toxicity (interfering with the formation of cells that circulate in the blood). The goal of treatment with 6-MP is to weaken the body's immune system in order to decrease the intensity of inflammation in the intestines. Needless to say, this causes great concern with special regard to her having PA.

We took Allison to the ER Monday night after projectile vomiting several times during the previous 16 hours, & moderate urine ketones. Her white counts were elevated & blood ammonia was normal. She didn't vomit during our time in the ER, so she was sent home with a diagnosis of "virus" & orders to switch her diet to "sick day formula" (no restricted protein). She was still cranky the following day, but the vomiting was less. That night she had a hard time sleeping & seemed to be in pain, lifting her legs off the mattress. The vomiting & crankiness continued into Thursday, so we took her back to the hospital for a direction admission.

Today, test result are indicating she has acute pancreatisis, with amylase level of 600 (normal range is 23-85 units per liter, but Children's considers normal up to 120 U/L.) Latest results show her amylase at 300 U/L. So she'll be at Children's for at least another night & will remain there until she stops vomiting & resumes bowl movement. They suspect the pancreatitis was caused by 6-MP, so she'll likely need to switch to yet another treatment for the Colitis.

May 6, 2008-  Allison is doing great! She just had a follow-up at Genetics yesterday.
She weighs 44 lbs now, is walking great (loves to dance & spin around), started
crawling and going up steps. She loves her group therapy that she's attending once a week (Austin loves it, too, because he goes to his "class"). Her vocabulary is really expanding!

Allison still gets all of her formula through her g-tube along with medicine twice a day for the blood in her stool (it's still there, and we'll follow-up with GI at the end of the month). She is eating about 10 to 12 tablespoons of fruits & vegetables per day.

We are looking forward to a wonderful summer full of swimming, trips to the zoo, etc! We hope to attend PA Family day again this year with our friend Gwen, and of course  we will be at the Corn Toss tournament in September, hope to see you all there!

March 14, 2008- Allison is pulling herself up to standing now! New milestone! Her braces
have allowed her to make progress with walking too. If she wants to go fast, she still uses her walker. She's doing much better going up stairs as long as we're behind her for support.
Allison is still looking well, but we're not seeing any reduction of blood in her stool since taking milk out of her diet. She will have a follow up with her GI doctor March 18 to help determine what action should be taken, then a heart echo & Genetics appointment on March 24. We'll hopefully know more after that.

She played outside with brother Austin last Saturday during the BIG snow day & they had a blast! Of course it only lasted a few minutes before the snow was blowing in their faces & they were ready to go back inside : )

Feb 21, 2008- The crop was a HUGE success & raised over $2700! Thank you to all of my amazing friends for your continued support. Allison's Colonoscopy & Endoscopy showed inflammation of the intestines & abnormal lining in her colon. Milk has been taken out of her diet in hopes that is all that's causing the problem. She will be seen again in 4-6 weeks with another Colonoscopy & biopsies to see if there's improvement. If no change, then medications will be prescribed to treat it as Colitis or Crohn's disease.

Other than that, she's doing great & gets around well with her new ankle support braces. She loves playing with her brother : )  

February 8, 2008- Allison is now 26 months old & still a super sweet girl. She's recently
had another jump in her weight, so we will continue monitoring that very closely. Yesterday we met with her GI doctor about the blood that's been in her stools since her  g-tube was replaced in November. They are concerned that it's gone on so long, so Allison will be admitted to Children's next Wednesday for 2 days for a colonoscopy.

Last week she was fitted for Orthotics to help correct & strengthen her walk. We got them yesterday, along with a new pair of supportive shoes & she's coping quite well, but they do seem to tire her more quickly than normal.

Please remember our family in your prayers this coming week.

January 15, 2008- Allison's stool cultures were all normal so they referred us to our
pediatrician. That's good, I guess, but we'd still like to know why it looks like blood is in her stool... She has an appointment with Genetics on the 21st this month. Other than that, nothing to report except that she's doing great! She says "good girl" all the time now :)

Also, the kids' second birthday party was super fun and they had a blast with all of their new toys and visiting with friends and family.

October 24, 2007 - This past month Allison has had good results at both her Genetics & Neurology appointments. The EEG showed improvement from January & no signs of seizures. She's had a couple recent trips to the hospital. The first for a seizure (very scary & the reason for the neurology follow-up), for which she was transported to the hospital by ambulance after becoming non-responsive & tremoring during dinner. The second trip was to the ER last Saturday night when her g-tube got pulled out. She still weighs right around 40 lbs & looks like a princess.

Two of her new words this month are "yellow" & "Buckeye!" She got her first haircut! She's walking quite well with only a little support needed. She still hates to crawl & doesn't like to put her hands & knees on the floor. Overall it's been a great month! Check back next month for updates from the big 2nd birthday party!

We had a great time at the Sept 29 Cornhole Tournament & feel so fortunate to have so many friends & family around to show their support. Thank you all!!!

September 15, 2007- Allison is doing very well. She had her monthly appointment w/genetics on 9/10. Her weight gain has slowed, which is good, she is still off of the
chart, but is leveling out… (Weighs a little over 40 lbs!) Her diet now consists of 8-10 tablespoons of solids each day (a little rice cereal, fruits & veggies…) and 43 ounces of her special formula (Propimex 1, Polycose, 2% milk, and water) which is still done through tube feedings. She will sip on water & juice, but doesn’t drink her formula very well…

She still has all 3 of her therapies, which are going great. We just started a group therapy once a week for 10 weeks, as well. She sits up, scoots, & walks on her own (uses her walker sometimes, especially when she wants to go fast & chase her brother!), but still has no interest in crawling. She is working on going up steps on her own! She bends over to pick things up, but holds on to something & locks her knees. We’re working on getting her to squat, and also to pull herself up to standing (still
needs a little help in this area). Progress has been great, though. She has 3 very special therapists! Her vocabulary increases daily & so does her sign language. She signs baby, ball, eat, play, more, etc. It is funny to hear her tell Austin “no, no” and say “all done” when she hears her feeding pump alarm go off!

Allison and Austin recently had their first adventure in an adult pool, and they loved it! I’m hoping to get them in lessons soon. Updated pictures will be added real soon (I have some great ones of them swimming & from our visit to PA Family Day in August). Thanks, everyone, for your support, and I hope to see you all at the Goat on the 29th!

Michelle

July 7, 2007- It's been a long time since our last update, and Allison has madea lot of progress! Her Immunologist said bloodwork looked good and she wouldn't need any more IGG infusions or even see him again unless she starts to get frequent infections...! YEA! Follow-up MRI on June 1st showed significant improvements in all areas! She was at Children's Hospital for an overnight stay on 6/25 (was vomiting, had ketones in her urine & elevated amonia level) but once on IV & her diet was adjusted, she was fine.

Allison is taking more steps than ever, and uses her walker only when she wants to go fast! She eats around 8 tablespoons of solid foods a day, and still gets 43 ounces of formula (through her pump since she is only interested in playing with cups). Loves playing with her brother, and being spoiled by friends and family! She has several words and is learning to sign.

We will be attending PA Family Day on August 11 in Illinois, and are excited! Mom, Grandma Char, Allison, & Austin are looking forward to their trip with the Mouats to spend the day with the other PA families.

April 10, 2007- Allison is still not walking but getting closer & has a reverse-k walker to help her. She’s currently on a slightly reduced calorie diet because she weighed 36 lbs (at 16 months). She still takes a few bites of fruit by mouth each day. Later this month she is scheduled for heart echo & follow up MRI to see if everything’s back to normal from her January illness. Last week she spent a day in the hospital after her Mic-key button (feeding tube) popped out. She’s fighting pink eye & a cold right now, but otherwise is doing very well. Gwen was also in the hospital that day & only 2 doors down. There is a theory that the girls planned this slumber party, since they were wearing matching pajamas.