Posted (Tina) in All Posts on August-16-2010

First, I want to apologize to all the Ella fans out there that receive our email updates. I’m so sorry about inadvertently filling up your inboxes with old posts. That is the first time that malware has touched Ella’s site. If it happens in the future, we’ve learned and hopefully can avoid blasting everyone with all those emails!

Things have settled a bit in our camp, especially since therapies ceased. It’s felt quiet with just me and Ella hanging out!

We went to see the pediatrician since Ella’s third birthday, so we could check in and get caught up on all her vaccines. In coming days, the pediatrician wants to monitor her weight gain, try our best to keep her from getting sick and return in September for the flu vaccine. The last time we weighed in, she was at 13.2 kilos. It seems lik she is gaining weight back. I’ll be interested to see the next time we visit a doctor.

At the request of her GI doctor, I took Ella to an allergist. When she was diagnosed with Eosinophillic Colitis in early July, it is typically caused by a parasite or an allergy to food or medicine. Well, she tested negative for parasites in the hospital. She was not taking any new medicines, but they were not 100% sure about the food. I questioned a food allergy since all she takes is formula! Plus, all her symptoms with her GI issues stem from her surgery in early April. Why would she be fine on other formulas for months and then all of a sudden be allergic to them, right after surgery? But, we wanted to eliminate it as a factor.

So, we went to an allergist for testing. They did the skin prick test for peanut, egg, milk, wheat, fish mix (cod, flounder, halibut, mackerel, tuna), soy and corn. Thankfully, she tested negative for all of these items. The allergist recommended another test called a “patch test”. They place the same items on a patch and you come back to the doctor 48 and 72 hours after they initially place it on. This tends to be a more sensitive test for eosinophills, which is what they found elevated in Ella’s colon. But since it takes 3 visits to the doctor’s office within 1 week, I left a message for her GI doctor to see if he wanted us to take that step. I doubt that she is allergic, so I’d like to avoid that test, if possible.

One thing that the allergist did raise that I had not thought about before: just because you do tests for allergies and they all come back negative, it still may not solve your mystery. Ella could have intolerances to items listed above, such as milk, that can be in formulas. Even though she is not allergic, she may be lactose intolerant. Therefore, she may get an upset stomach, bloating, gas, etc., yet not be allergic. Unfortunately, there is no way to test for intolerances. If patients report those symptoms and does not test positive for allergy, it is labeled as an intolerance. Since Ella can’t communicate, it makes it hard to know if she has an intolerance. One thing is for sure: feeds are still challenging. She does not like them and whines when she sees me approaching with the syringe. Not every time, but sometimes, she cries after a feed. This tells me that there must be some type of pain involved.

Even the past week or so, I’ve noted some questionable green bile coming out of her g-tube before her first feed in the morning. I’m not as concerned about an amber color bile, but when it becomes green, it starts to look like early signs that something is not right with the bowel. Plus, her stools are still not normal. Sigh…we’re going to need to watch this closely. It is not a good thing to see.

Also, I’m not sure if I mentioned on a prior post or not, but Ella’s reflux seems real bad these days. I feel like it has been worse since the hospital visit in early July when they did the endoscope. I think it may have loosened her nissen. Now, when she gets mucoids after a feed, there seems to be a lot more. Plus, it has the color of formula whereas before it used to be clear. This is not good because 1) it means that there is greater risk of aspiration and 2) the contents would not just be mucus but may contain food which could give her an infection in her lungs.

We have our appointment with the school district this week. I’m very curious to see what they are going to propose for Ella’s educational needs. In order to prepare, I also joined the ARC of Aurora which is a non-profit agency that focuses on helping families of children with developmentally disabled children. They have an advocacy program. An ARC advocate will be at the meeting this week and is armed with all the legal knowledge, so that we can push the school system as much as possible, to get the most for Ella. Preschool would normally be 10 hours per week and include OT, PT and speech. I expect them to come up with some way to deliver those services at my home, since Ella cannot be exposed to other children. The team that visited us in June should have an IEP (Individualized Education Plan) written out and they are going to review with me. For those that don’t know, the passage of the updated version of the Individuals with Disabilities Education Act (IDEA 2004) made parents of kids with special needs even more crucial members of their child’s education team. Parents can now work with educators to develop a plan — the individualized education plan (IEP) — to help kids succeed in school. The IEP describes the goals the team sets for a child during the school year, as well as any special support needed to help achieve them. So if I don’t agree with what they are proposing for Ella, then I can appeal and go through the mediation process. Wow, all this advocacy work for your child is exhausting!!!

On a similar note, we finished all of the paperwork required for the Medicaid Disability application process and are still waiting to hear whether Ella qualifies. We should know by the end of October, but hopefully sooner.

As all of you know, Ella has certainly made progress as the months and years have passed albeit slow. One area that seems to remain about the same is her learning. In other words, I think we are really feeling that the delays we are seeing with learning, speech, communication, and overall developmental delays stem back to the diagnosis and findings on the MRI in the NICU. For a refresher, here is what the medical report stated concerning her neuro status:

Ella required sedation and pain medication for a very long period of time. She weaned off Versed after 105 days and Fentanyl after 136 days. Suspected seizure activity was noted in August 2007. EEG on 8/2/07 showed non-etiological cortical cerebral dysfunction, potential lower seizure threshold over R temporal and L central regions, no sub-clinical seizure activity was noted. Infant was loaded with Phenobarbital and clinical signs of seizures stopped. Phenobarbital was stopped on 12/7/07 and Ella has no further evidence of seizure activity. Her repeat EEG on 1/7/08 showed some background slowing and impedence, likely related to fluid around her brain. Multiple cranial ultrasounds were normal. Head MRI in 12/19/07 showed global cerebral atrophy and focal encephalomalacia in the L parietal lobe.

I know that is a mouthful to digest and I remember being overwhelmed the first time hearing the news way back in early 2008. The NICU doctors explained that there was no way to know if we would see the impact of these findings because baby’s brains are not mapped. Since she was still very young, we were hopeful that we could make huge strides with therapies, as many of her fellow CDH friends have done (walking, talking, eating, learning overall). But, I think the reality of these findings from way back in the NICU are resonating more and may explain Ella’s developmental delays.

There is no prognosis for Ella medically, nor a road map of what to expect with her developmentally. Literally, we have to take each day at a time. Some days are better than others, but I’m not sure the pain of it all ever really goes away.

Thanks for all the support and continual prayers for our little miracle.

Proverbs 3:5-6 (NIV)
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will make your paths straight.

Jim and Char Snyder-Jordan on August 16th, 2010 at 8:59 pm #

Thanks for the update. You are always in our prayers. Love, Jim and Char

Karen Wilson on August 17th, 2010 at 12:18 am #

My thoughts and prayers are with you all. As a speech therapist who works in preschool I all too familiar with the process you find yourself in and your battle with the school district, albeit from the other side. I will pray that you guys can come to an agreement quickly so Ella can get the therapy and education she needs. It is quite a shift from Early Start services to district services! May God bless your family during thus time and provide for all of your needs. Love you!!

Dotty on August 17th, 2010 at 1:03 am #

always in our thoughts, what a beautiful happy girl she is! thank you for sharing her story for the world. she is amazing! her MRI sounds alot like zachs, for some reason…unknown he has the brain atrophy, had seizures, but in his case it was from the blood on the brain. we finally got a diagnosis of cerebral palsy, basically a blanket diagnosis for the cerebral atrophy, he isnt stiff like most with CP he is very floppy, hypotonic. dont know if it would help you with the disability application…but you may be able to get the CP diagnosis as well. in any rate, hope the bile/reflux issue is resolved soon. hugs!

Loren Llizotte on August 17th, 2010 at 5:42 am #

No matter was Ella is still growing up. Tina, I’m sorry Ella has not been able to make more developmental strides. Chin up, miracles are everywhere.

Steve and Joan on August 17th, 2010 at 6:24 am #

Ella you are so beautiful and what gorgeous hair!!!!! Prayers for good results from the school meetings and Medicaid…..hugs and love, steve and joan

John & Estela Williams on August 17th, 2010 at 6:33 am #

Keeping you all in our prayers… love ya!

Jennifer Tenney on August 17th, 2010 at 7:01 am #

Josh and Tina-
I am a mom to a Right-sided CDH survivor who was also treated at Shands by Dr. Kays. Dakota is 20 months now and I have been following Ella’s story since shortly before Dakota was born. I read the entire story twice before Dakota was born to prepare me for life in the NICU and to give me hope on how much these babies can overcome! I have ached for your struggles and Ella’s continued medical mysteries and I have celebrated her progress and acheivments. I think what I have noticed, above all, is that Ella, even with all her struggles, seems like she has so much joy in her life (thanks to wonderful parents). She has a bright smile that goes all the way to her eyes! She has a beautiful, fun and stimulating environment. I admire you guys for your patience and strength. I hope Ella continues to progress and gets healthier as time goes by-it cannot be easy to have patience through the struggles! Hugs!!!!
Mom to Dakota 12-25-2008
RCDH survivor

Eve Johnson on August 17th, 2010 at 7:55 am #

All of the words we’re taught to pray…strength, perseverence, grace, healing…can become wrote and even seem to become weak when we’ve prayed them so often. And yet, God hears them anew each time. So I pray these things for you, Josh, Tina and Ella, that you would have all this and more from our mighty Lord.

Heidi Ham on August 17th, 2010 at 9:56 am #

Thanks for taking the time to update us all on Ella…I pray things work out for the best for Ella and yes it all does sound very exhausting…I applaud you and Josh for all your continued hard work. Ella is beautiful! You are all a very special family <3

Jennifer Harris on August 17th, 2010 at 12:49 pm #

Thank you for sharing…we see Ella’s growth and continue to pray for her. You two are wonderful and dedicated parents and constantly remind me of the miracles GOD sends our way every day!

Marge (A Friend in Indiana) on August 18th, 2010 at 9:28 am #

Praying always for Ella and both of you; May God Bless you all.

Linda on August 18th, 2010 at 2:12 pm #

Ilove to get updates on Ella and especially see how she is growing. Your family is always in my thoughts and prayers and it is wonderful to see Lola feeling better and it looks as though she and Ella are real good buddies. I admire your faith and you have been an inspiration to many around the world.

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