Posted (Tina) in All Posts on August-27-2010

Great news! We are still finalizing all the details with the school district, but Ella does qualify for school services in our home due to her medical needs. That makes me very happy. She needs occupational therapy, physical therapy and speech therapy. So we will be getting likely 2-3 hours per week from licensed providers in our home that work for the school district. Since we are still finalizing the IEP, services have not started even though school has started.

Apparently, getting the verbiage on the IEP is very important. I secured an advocate from ARC (a non-profit organization that supports families with disabled individuals) and she has been an invaluable resource. The advocate and the school district are still at odds as far as some of the verbiage in the IEP. But once we can work that part out, we should be good to go. I know that therapy in the home setting is the best choice for Ella right now based on her health issues. I hope that someday she can be healthy enough to be around kids every day and I do think we’ll get there, but I know that she is still too medically fragile for a classroom setting right now and so do her doctors!

We’ve still had GI challenges with feedings. Once we saw more army green colored bile coming from Ella’s g-tube, we backed off of food for a day or two. Now, we’ve started slowly introducing food back into her diet (more diluted with water than normal) and are working to get our way back to full feeds. Apparently, the break for her intestines did wonders. It is like starting over and having her feel good, no discomfort with feeds, etc. I can tell if I’ve added too much food or pushed her too hard because I get discomfort, fussiness and/or loose stools. So, it’s a challenge but at least giving her a break is an option for now. It also seems to have slowed down and/or eliminated the angry dark green bile. I guess that is her system’s way of telling us to back off or else!

We’re waiting to hear on her Medicaid Waiver approval/denial. We did get a letter from the state noting that they received Ella’s Medicaid Disability application and that they do consider Ella disabled, according to the state’s definition. That is another step in the right direction for securing Medicaid. Did I mention it is hard to read a letter that states that your child is officially considered disabled?

This verse hit me recently:

Psalm 37:3-6
Trust in the Lord, and do good;
dwell in the land and befriend faithfulness.
Delight yourself in the Lord,
and he will give you the desires of your heart.
Commit your way to the Lord;
trust in him, and he will act.
He will bring forth your righteousness as the light,
and your justice as the noonday.

Along those lines, Ella and I spend time in her room in the mornings after her first feed. We cuddle and listen to the local Christian radio station together for long, lazy mornings. God always uses songs to speak to my heart. It is His way of telling me to continue to believe…to not throw the towel in when I have those really challenging days…to continue believe in Him and His promises no matter what the physical world and circumstances might tell us.

I love my little girl so much…and I know deep down that He has a plan for her.

This song is by Kutless. You can listen to it below (there is an intro advertisement).

What Faith Can Do
Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think its more than you can take
But you are stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
You don’t have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That’s what faith can do!
Even if you fall sometimes
You will have the strength to rise

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.