July 2015 I can't remember the last time I wrote an article or update about my amazing girl...I also can't remember the last time she was in the hospital before now. It is Friday, March 20th, and she was admitted the evening of the 17th. Thankfully, hospital visits are less frequent the the first few years of her life. We are here now because she has a stomach bug like the rest of the family, but couldn't get better on her own like we did. So...IV fluids (D10), Carbaglu, and "sick day" formula...
Nationwide Children's Hospital is an incredible place, with an amazing staff. Before I go on about Allison, I would like to thank some of the most special people in her life. "Daddy" Dave, who does EVERYTHING! Grandma Char, who cares for her and/or her twin brother Austin for countless hours whenever needed. Yvette Williams, her home nurse for over half her life, and full-time nurse at Nationwide Children's Hospital for 20 years this August! Dr. Bartholomew, Jimia Hoy, and everyone in the Genetics department, and all of the wonderful nurses on the 11th floor (many who have cared for Allison since she was a week old!) We love you all and couldn't do this without you!
Allison is currently in 3rd grade and is in a special needs class (another special person...Kelly Duell, intervention specialist who has taught her SO much, every year since kindergarten!) Despite her developmental delays, she is reading and writing many words, doing math on a calculator, and expressing herself more than ever! She wears DAFOs, receives physical, occupational and speech therapy weekly. She loves music (Frozen soundtrack, Laurie Berkner, and nursery rhymes, mostly), dancing, playing hide and seek, arts and crafts, swimming, and playing with her friend Gwen. There isn't much she doesn't like, all I can think of is storms, dogs (but she is getting better), and she isn't very interested in food. Primarily G-tube fed her special formula (which consists of Propimex 2, whole milk, MCT oil, water, and levocarnitine) she is only allowed 3-4 grams of protein a day by mouth. She will snack on her favorite..."white cookies" (mini vanilla Oreos introduced by Grandma Char), and occasionally have a little applesauce, juice, or taste of something (but when asked usually replies "no, I don't like that anymore").
Potty training has been one of our biggest challenges. We have tried lots of things including the potty watch, and just not using pull-ups, but underwear instead. Very messy! The combination of her diet, delays, and ulcerative colitis make it necessary for us to use chucks on her bed every night as well. I just paused and wandered off thinking about whether or not she gets teased or made fun of at school. I am back now because I don't want to think about that. I know I wasn't always a nice kid, especially when I thought someone wasn't "normal".
Our goal for Allison is to be as "normal" as possible. We would love to see her become independent, have a job she enjoys, and maybe even have a family of her own someday. Whatever she wants is our wish, and we have to help her discover what that is.
August 1, 2012- Allison is just 3 months from turning 7! So hard to believe! She is doing well, and having a great summer. She was flower girl in her cousin Ashley's wedding. She even went to the salon for an updo for the special occasion, and did great. She loved it, and looked beautiful! Her brother was handsome in his tux :) They did a great job!
They will both start 1st grade in August. We decided to keep them at their separate elementary schools just like they were for Kindergarten. Allison is in a great program, the Multiple Disabilities class, and is making such progress. She knows full name, birthday, address (we are still working on the city!) all letter sounds, and is starting to read sight words. She is always just so happy and chatty. Everyone loves her, and we love them, so I will just have to "tough it out" as far as the 2 school thing goes. Austin loves his school and walking with the neighborhood friends....
Potty training still is not where we'd like it to be, but she is making progress there as well. She goes sometimes, and is good at getting clothes up and down (but not completely on and off), herself. Her favorite things are water (swimming, bath, playing "pouring"), music (we have iPad apps that she loves to sing along with, and recently added strumming a ukulele, dolls and dollhouse, computer, TV, and the playground. We are registered to start her at Kidnectic Energy in the fall for dance/gymnastics.
I don't want to talk about the hosp..al.....I always seem to jinx it! We have heard that the new NCH facility is beautiful, but think we will take our time to see for ourselves :) She had 1 overnight stay in April 2012, before new facility opened, and prior to that, hadn't been there since Feb or Mar 2011. She does still miss quite a bit of school, though. Every little cold is just so much harder on her than it is for the rest of us...
We have a Poker Run scheduled for August 25th. It is a fundraiser for the Propionic Acidemia Foundation. We are committed to raising funds for research, and finding a cure! Details are on facebook (event) listed under Poker Run for PA (I think....or PA Poker Run....but if you have trouble finding it, let me know) Also, feel free to use any pics from FB as well. I have some more good new ones I need to get loaded.
Thanks for everything!
Michelle
August 30, 2011- Has it REALLY been over a year since the last Allison update? Can't believe it.....
Allison is doing very well! Has had a great year, with only 2 or 3 hospitalizations, and nothing major to report medically. We have been using a new drug called Carbaglu when Allison is sick. This is supposed to help keep her ammonia level down. We feel it helps her, although we are waiting to hear complete results from a study she was in (along with Gwen) this past June in Cleveland. We also took Allison for testing at Nationwide Children's Hospital's Behavior/Austism Unit. They did not give us any new diagnosis, just said we could come back for further testing in the future if we felt it was needed.
She is now in kindergarten! She attends full days, spends time in a special needs unit and some time in a regular classroom. So far it is going well, but she has only gone 4 days so far (already a sick day, too!). She is pretty tired from the long days, but is always happy and excited to go!
Allison is learning to do much more on her own. We are still working on the potty, bathing, and dressing. She loves swimming and playing in and with water, enjoys all toys, books, puzzles, etc. Her favorite things are music/singing, reading books, playing with her dollhouse/people/van/playground set, cartoons, and puzzles, and, of course, playing with her dad, mom, and brother!
June 1, 2010- We just got back from a GI appt., Allison weighs 56 lbs and is 43 inches tall now. Her colitis remains under control, and she is metabolically stable as well.
Lab results have been good, and her diet has not been changed since October of
2009. She continues to do well eating, although the majority of her nutrition is
still through her G-tube. She loves carrots, especially canned. She asks for
more and even does it herself! She has also tried many other new things, like
lettuce, celery, cantaloupe, watermelon, green beans, Popsicles, and lollipops.
She just usually touches it with her tongue and then she's done (except for the
carrots!)
She continues to make strides in her development, however, we do notice some
repetitive habits and patterns. Her vocabulary has really expanded! We will be
continuing therapies over the summer (her last day of school is Friday, June
4), and hope to get her in swimming lessons. Her favorite things continue to be
singing and dancing, playing with dollhouses, reading books, and watching Dora,
Diego, Wubbzy, etc. She also loves riding bikes, riding in the wagon, and
playing at the park/playground.
She remains on Flovent (twice daily), and Abuterol (as needed). She was
hospitalized in March with pneumonia, and had to spend another night in the
hospital in April for a cough. the on-going respiratory issues are concerning,
but she will be monitored closely!
January 29, 2010- Allison has been doing very well. Her last hospitalization was in
August 2009. She had to see a pulminolgist because of some breathing
issues and coughing. He has prescribed Flovent and Abuterol since she
might have asthma. Allergies have been ruled out...the only know allergy
is Mercaptopurine (which she has taken twice for her ulcerative colitis
and both times it caused pancreatitis). She is currently on
methotrexate, balsalazide, folic acid, and levocarnitin in addition to
the inhalers. She takes some food by mouth, but still gets most of her
nutrition through her g-tube.
Allison is in her 2nd year of preschool and loves it. Austin started
this year as a sibling peer at the same school, but not in Allison's
class. They ride the bus & have recess together and are in classes next
to each other. It is so awesome when the classes combine for a musical
presentation and we go watch them perform.
We have a lot of upcoming appointments for Allison. February she will
have follow-ups with Pulminology, Genetics, and will get fitted for new
orthotics. March she goes to GI. H1N1 shot and booster are done, and our
whole family is looking forward to spring!
August 26, 2009- Allison has been hospitalized 3 x in the last 4 months for vomiting & large ketones. She has had abnormal EEG (on & off lamictal), abnormal EKG, and abnormal chest x-rays. Her right upper lobe in her lungs isn't working properly and she gets short of breath/tires very easily, so she may need to see a pulmonary specialist. Drs are not sure if this is related to PA, or possibly a side effect of Methotrexate (used to treat Ulcerative Colitis). She will need another Heart Echo (her third one this year) and we should know more in the next week or so.... we'll all be getting flu & H1N1 shots as soon as possible.
She returns to preschool on Sept 1, and we are happy to announce that Austin got a spot as a sibling peer in the class next to Allison (they'll ride bus & have recess together). He starts Sept 8. Austin's appointment for "screening" got cancelled because while Allison's teacher was here for a home visit she asked him if he knew his colors, he replied "red, yellow, and blue are primary colors. Green is a secondary color" we all cracked up, she called the screener & told her he was ready & she's sending out the paperwork, told us there was no need to bring him in. It was pretty funny.
June 2, 2009- Allison finished her 1st year of preschool! She did great! Is more social, and less stressed by things like loud noises, ceiling fans, etc. She has been hospitalized a couple times in the last few months. They think that she has been having seizures, so she is now on a new med for that. She'll finally be done with her steroids this week. We are waiting for results from a follow up EEG that she had done last week. She sees an ophthalmologist this week, Genetics on 6/22, GI and Nuerology in July.
We are looking forward to a fun summer with family and friends! We've already been to the zoo to see Beco, the baby elephant. Plan on enjoying parks, playgrounds, swimming, etc.
Thanks to everyone who made the Poker Run such a success on 5/30! Around $1500 was raised for PA research, and we had a great time doing it! I'll get new pictures posted soon! Have a great summer! --The Ellis family
February 7, 2009- Allison and her brother celebrated their 3rd birthday in November. We had a very fun holiday season, they are at such an exciting age! Allison started preschool in December. At first she was a little hesitant of the big bus, but now she says "I can't wait!" She loves it! She talks about her friends there, her teachers, the dollhouse, riding bikes, snack, etc. She was/is quite upset when school is cancelled. She insists on getting her shoes & coat on since "the bus is coming!"
Allison had lab work done and was seen by Genetics and GI on 2/2. She is 40 inches tall now & weighs 50 pounds. Her next Genetic appointment will be in May, as she is doing very well metabolically. Her labs aren't as good when it comes to her Ulcerative Colitis. She still has severe inflammation and is anemic. They want to get her off of the steroids and start something new. We will be trying the Methotrexate, but in pill form (which we can just administer through her G-tube). She'll also be given Folic Acid to try and help counteract some of the possible side effects.
We are happy and blessed to have the beautiful twins, and such a great circle of friends and family. I don't know how we'd do it without all of the thoughts, prayers, assistance and LOVE that we receive from so many of you! Thanks so much! Special thanks go out to my mom (Charleene Orcutt) who since she retired has put in countless hours caring for the kids and helping us so much. Dave's family who give endless support and love in so many ways. I can't possibly list everyone, but thanks Aunt Lynne, Yvette Williams (Allison's RN at home), Mary Lorenz, Meredith Blasing, Becky Fox, the Mouat family (the kids had so much fun at our recent play date, Allison will slip on her Dad's shoes every now & then & say "go see Gwen!"), Robert and Michele Akins, friends at Grouchos, and everyone at Archiver's. I hope to see many of you at the upcoming crop there 2/16 to see how much money we can raise for PA Research! We even received a special letter from Christine in New York who wrote after birthday is the same day as hers. It was such a touching letter, words can not even describe it. Thanks to everyone reading this for all of your continued support! We love you!
November 15, 2008- Allison is now 44 lbs. and 40 inches tall. She will be turning 3 years old on November 29! She will be starting preschool at Olentangy on December 2. We're still waiting for lab results to determine if she'll start methotrexate injections weekly for U.C. (The mercaptopurine is no longer being given due to causing pancreatitis.) They don't believe that the colazal and prednisone she's on is helping (although she'll continue on these with the shots.) Pediatric vivonex is not available so we're transitioning back to a formula with 2% milk.
August 12, 2008- Just wanted to give you an update on Allison: We feel that she is doing
great, of course! She is singing, dancing, loves to color (especially draw circles) and counts to 7 in Spanish!! Her therapists are all impressed with her progress.
She had a GI appt today (weight 19.5 kg 42 lb 15.8 oz, height 98.6 cm 38.82 inches) and we were told that the labs still show inflammation (highest levels yet) These are the further treatment options that they told us to consider:
1. Repeat trial of 6-MP or prodrug azathioprine starting at a low dose and working up as tolerated.
2. Methotrexate beginning as a weekly shot. Could be changed to G-tube once it is known that it will help. (oral associated with more nausea and other digestive side effects)
3. Steroids
Dave and I want to research and talk to genetics (she goes Aug 18) before we start a new treatment!
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, 2007Allison 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.
March 13, 2007: Allison is doing great, wants to walk SO BAD! Almost took 1st step yesterday, but still has to hold on to something. She has a follow-up in genetics on Monday, so we’ll know more then, but she’s almost back to how she was prior to January’s illness. (just need to get her back to eating solids, which she has been eating a few bites of fruit each day…)
February 2, 2007:Allison is improving daily, becoming more like herself - smiling, clapping, sitting up, and laughing. She is still working on getting her strength back to be able to stand again, as well as getting back to taking her bottle.
January 29, 2007: Allison’s development has been supplemented with Physical and Occupational Therapy and focusing on her Gross Motor Development. Allison was saying a few words, clapping her hands, and getting very close to walking, when she developed a virus. This sent her back to the emergency room on Monday January 15th, 2007, with symptoms of vomiting and showing Ketones in her urine. After a day of testing, including a MRI, Spinal Tap, C-Scan, EEG, and Chest X-ray and another night in the ICU, she was diagnosed with a virus. They think a virus caused metabolic crisis (due to her Propionic Acidemia), and resulted in swelling of the brain. A neurologist said she had “chorea” which was “secondary to swelling of the basal ganglia.” Her EEG showed decreased brain activity and her MRI showed the swelling or “lesions” as the neurologist referred to them. She is home now, but not herself (not taking food or bottle, not sitting up, not holding toys, not talking…) They told us it could take weeks or months to tell if damage is permanent, but that the swelling and chorea should go away.
Prayers for Allison's quick recovery are very much appreciated! Thank you.
November 28, 2006:Allison and her twin brother, Austin, share their first birthday 11-29-06!! Allison's parent's said her reflux has improved greatly and is much happier since her g-tube placement last month. In fact, she no longer takes reflux medication! She is now growing much stronger too! Due to PA she has always battled low white blood cell counts and low Iggs. For treatments she has received 3 monthly infusions. She is finally sleeping through the night on continuous pump feeds through her g-tube. She this week is now beginning to hold her own bottle and stand with support!
October 2006:She still was not eating really well and in October she got a feeding tube to assist her in getting all of her nutrients.
July 2006: Allison's white blood count showed up low and after consulting with an immunologist, she was diagnosed with an IGG deficiency.She received infusions in August, September, and October.Her blood was checked in December and her IGG levels came up and consequently has not had an infusion since.
May 2006: Her acid reflux was the reason for this visit. After receiving Previcid and Reglan she was back home. We also learned how to place her NG tube for supplementing formula she refused to take.
December 10, 2005: Allison Lynne Ellis was born on November 29, 2005 in Columbus, Ohio. A healthy little girl, weighing in at 6’3 oz with her twin brother Austin at 5’10oz, the future looked bright. It was a healthy normal pregnancy. On Allison’s 1 week birthday, we got a phone call from the pediatrician’s office that said her newborn screening was abnormal. The few days prior, we did notice that she had been very sleepy and difficult to feed and we had a Dr. visit scheduled for later in the week. But, when we Dr. asked us to bring her in to get more blood work done as well as a urine sample, I was feeling nervous.
After the tests, they sent us home to await the results. On Wednesday, we called and told them that she wasn’t eating and they said to bring her into the office immediately, and once they saw her, they sent us to Children’s Hospital—this was Wednesday night. That night she had many firsts: including a spinal tap, IV, Oxygen, and was placed into a warmer and spent the night in the PICU. (Pediatric Intensive Care Unit). On Thursday December 8th, she was diagnosed with Propionic Acidemia. She spent her first week in the hospital and came home with a new diet of Propomex 1, Similac, Biotin, and L-carnitine. Allison did well until her next hospital stay 4 ½ months later.