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Roller Coaster....

I feel like I have been on an emotional roller coaster for the past couple of weeks -- I've shed tears of thanksgiving, happiness, and joy as well as those of deep sorrow and dispair.

Friday, March 1st
I joined two other local moms of kiddos with special needs in a panel discussion about being a parent of a child with special needs at a local MOPS group. It was rough, but I think it went okay. When I am feeling up to it I will write out my answers to some of the questions that were asked. The journeys for myself and my two friends are all very different and unique to our child and their diagnosis but the feelings and emotions that go along with this journey are very similar. We spoke of our child's health issues and how it impacts our marriages, friendships, finances and every aspect of our lives. We also shared ideas for moms of typically developing children that might help them educate both themselves and their children about children with special needs and their families so that hopefully they will have a respect for ALL of God's children. I was so thankful to Melissa and Heather for joining me and for the MOPS gals for inviting us to come and speak with the group and for the kindness they showed.

Monday, March 4th
Ethan had his six month follow-up appointment with the endocrinologist. I can't believe he has been steroid dependent since September. We had many questions, especially since Ethan has nearly had as many days on his stress dose as his maintance dose because of how sick he has been since November. Overall it was a good appointment -- no changes to his meds, and we made plans to have an emergency injection on hand for both home and school (in the Fall) that in the case of an emergency could mean the difference between life and death. I am so thankful that because of the urging of my GFPD family we have monitored Ethan's adrenal function regulary since diagnosis and we pray that since we "caught" the changes in Ethan early on that we will be able to, with the help of the steroids, be able to avoid the additional stress of Ethan going through an adrenal crisis at some point. This of course is not a guarantee, and adrenal issues, like nearly every aspect of PBD-ZSD vary greatly from one child to another, and while I do not like that Ethan has become steroid dependent so early on in this journey at this point the longterm risks and side affects of prolonged steroid use far outway the risk of not addressing Ethan's adrenal issues.

Tuesday, March 5th
Ethan went to school -- well, for a few minutes anyway. When we got there it became apparent that one of the little girls in his class was not well, and since she did not have a fever, was not going home --- so we headed back home instead. We have such a hard time keeping Ethan healthy, he missed school both days last week, and I wasn't going to keep him there with a classmate that had a nasty cough. I wasn't irratated at the school or the little girl -- it wasn't their fault, but I was upset that the parents sent her to school sick. This is a class of kids with varying degrees of special needs and many have delicate immune systems and therefore we need to all keep our kids home if they are sick. So, we came home.

I was very thankful that Ethan played peacefully while I called the billing dept. at the hospital to straighten out a therapy bill that we should not have gotten. Praise the Lord for the amazing woman in charge of Early Intervention (EI) billing for the hospital who was not only able to reassure me that the bill was a mistake and that we did not currently owe them anything and was able to answer my questions and concerns about what we were going to do for therapy once Ethan ages out of EI this summer (since the PT and Speech he will receive at school will not be enough). While not everything is completely ironed out, the good news is the plan is for Ethan to continue to receive PT and Speech services from his current therapists and that the hospital is going to work with us on the portion of the bill that insurance won't cover. I'm sure there will be come bumps along the way as we finalize everything this summer/fall but we now know that they are willing to work with us so that Ethan can get the services he needs. I felt like a huge burden had been lifted after getting off the phone! Thank you for those who have been praying for us about this specific concern. I'm sure I'll be asking for it again as we draw closer to the transition but for now, I have a lot of peace about the situation. We are going to make this work. Praise the Lord!

In addition to getting the good news about therapy continuing after age 3, we spend the day waiting to hear the exciting news from a very dear friend Mel about the birth of their new addition. Mel is a fellow PBD-ZSD momma and their family has been wanted to add to their family for years. On Tuesday this prayer was answered as they did so through the miracle of adoption. A beautiful healthy baby girl was born. I thank God for this miracle, this child, my friends, and the brave birthmother and her amazing sacrifical love for the child she carried and placed with a forever family. Baby girl is doing well at home surrounded by the love of her Mommy, Daddy, big sister and tons of of extended family. I have shed tears of joy several times this week for this miracle and gift.

Thursday, March 7th
Ethan went to school and everyone seemed healthy enough that I felt comfortable leaving him. He seemed so happy to be at school with his friends and teachers. Ethan really enjoys the social aspect of the STEPS program and for the most part really loves people -- especially when they want to play with him! :)

While Ethan was at school I was able to get a few things done -- we desperately needed groceries, and it so much easier to do this alone. :) It was a pretty productive morning.

I also learned that sweet little one with PBD-ZSD passed away on Wednesday. Aila was from South Dakota and was just shy of six month old. Please pray for Aila's family.

Friday, March 8th
We started the day with an early morning trip to the hospital for outpatient physical therapy on the tredmill. Ethan wasn't as enamored by the activity this week as he was last week, but he still did pretty well. He walked on the tredmill (with help -- a harness and the later being held by the PT) for just over 10 minutes, with a few brakes, and then worked on standing and walking in his walker with the sling. He is pushing up more, holding on to the walker a bit more, and overall is making progress.

Following PT we headed straight to the orthotist for a check of Ethan's AFOs. No adjustments were needed for the braces, but the orthotist did take a bit of extra material out of Ethan's shoes for us and we were able to take out the insole of the shoes to provide an even better fit. Although Ethan isn't a big fan of his AFOs, because he can't crawl and pull up as easily when wearing them, they do give him the added support he needs.

Ethan's DTH (developmental therapist for the deaf and hard of hearing) was supposed to come for her weekly visit however she called to let me know that she had been at a family's house earlier in the day in which everyone was sick so I gladly thanked her for letting me know and told her to stay away from us. LOL :) I appreciate that our therapists don't take it personally that we avoid them when they have been exposed to germs we don't want to "catch."

We ended the evening with Ethan running a bit of a fever -- 100.9. Not high, but enough for us to make sure he got some ibuprofen and tylenol in him before headed to bed. Fevers aren't something we like to mess around with here at our house. Ethan is also cutting a tooth and another is trying to come through. These are both bottom teeth -- he still only has two on top. Children with PBD-ZSD typically get their teeth VERY late, and can have them come in out of order and sometimes in weird and wrong places. While baby teeth are typically okay, once they finally get them, the adult teeth typically have little to no enamal which in turn causes another whole slew of issues. It just never ends with this disease - URG!

Saturday, March 9th
I learned today that another precious little one born with PBD-ZSD is with Jesus. Kendall was also just shy of six months old. Kendall's family is in New Mexico and there aren't any other GFPD families anywhere near them. Please pray for this family.

Sunday, March 10th
Ethan and I stayed home again from church. He was still a bit warm and with the boogies and caugh creeping back, we played it safe -- not wanting to share the germs.

Monday, March 11th
We had our first consult with the GI doctor. It was an "okay" appointment, and we got some of our questions answered and also had our fears confirmed that it is time for Ethan to have a feeding tube placed. Even as I type this my stomach is churning. I just hate that this is another thing that PBD-ZSD is stealing from Ethan and us as a family, but it seems like we have put off a feeding tube as long as we can. We are now waiting to hear when the surgery will be take place -- probably in the next 6 to 8 weeks.

Why is it time? Well, on one hand Ethan has not really grown much in the last 18 months. Since the majority of children with PBD-ZSD tend to remain small (which can be a real blessing considering the level of car that most require) more important than his growth is the fact that we are simply unable to meet his nutritional and fluid intake/needs.

Ethan is choking and gagging on his bottle (he has not yet mastered a sippy or straw cup -- he has no interest and/or ability to do so at this time) and is very gulpy and messy when drinking. His fluid intake has continued to decrease to the point that we are constantly at the verge of dehydration. He is still safe and doing well with purees when he wants too -- and that isn't all the time and feeding is often a two person job because he just refuses and we have to "force" feed him (Jeff has to hold his head while I shove it in) -- very stressful. He has also been sick with upper respiratory junk since November that we just can't seem to get rid of, which has led several of our therapists -- feeding, dietiatin and SLP to believe along with the other issues that he is aspirating some of his formula into his lungs.

I am really struggling with this decision for a number of reasons. Feeding your child "should" be easy. We have always had problems in this area in addition to all of Ethan's challenges, but as a mom this one just seems so personal. I am also very concerned about the surgery -- it is a "common" and "simple" surgery but it is still SURGERY on MY LITTLE BOY! I am also worried about Ethan's acceptance of a feeding tube and I fear that he will attempt to pull it out. There are several PBD-ZSD moms going through similar fears right now and I have gotten some good ideas of how to try to reduce this risk from this happening.

A feeding tube just adds another level to all of this -- another punch in the gut about the reality of this diagnosis and this horrible disease. While our heads know that this is the route that we need to follow in order to meet Ethan's nutritional and fluid needs in a safe manner. Without proper nutrition Ethan's health issues will only be amplified, especially during times of illness.

At this time we simply wait to learn when the surgery will take place and I'd like to ask for everyone's prayers for Ethan, Jeff and I as we go down this path. Pray for the doctors and nurses that will be taking care of him and that when Ethan is healed from surgery and as we begin to learn all the new stuff that comes along with having a child with a feeding tube that we will someday look back and understand what a blessing it is to be able to safely meet Ethan's nutritional and fluid needs and we will be "glad" that he has his tube. The plan will be to use the feeding tube to suppliment his intake. We will be able to make sure he gets all the fluids and calories he needs even when he doesn't want to eat and/or drink. It will also give us the opportunity take away the stress of making sure that Ethan gets the many many medicines that he takes on a daily basis. 

I also learned that another one of our GFPD babies was in the hospital and is really struggling.

Tuesday, March 12th
Ethan appeared well enough to go to STEPS and seemed to have a good time. I feel bad that he misses so much therapy due to being sick. When I picked him up his teachers and therapists shared that Ethan had a good day, minus the fact that he didn't want to wear his hearing aids.

In the afternoon, Jeff's dad came over to watch Ethan so that I could begin the drive to Peoria (about an hour and half away) to "woman" a table at a special needs informational fair to let people know about Illinois Mommies of Miracles. There were over 90 different organizations and service providers at the fair and I was able to share information about Illinois Mommies of Miracles with a number of families as well as the providers who serve families of children with special needs. Illinois Mommies of Miracles is now 300 moms strong and includes moms from Rockford to Carbondale and nearly everywhere in between. I also had the chance to meet some of the moms that I have connected with online through our group in person at the fair -- which was awesome! The drive back took a bit longer due to the weather -- the snow and sleet I drove through in the dark made it hard for me to remember that it is mid-March!

Prayer Requests
  • Ethan's upcoming feeding tube surgery, the healing, and our adjustment to this new part of our journey.
  • My GFPD family. We have already lost so many little ones this year. We need real treatment breakthroughs and a cure. Pray for the families whose children are fighting PBD-ZSD daily, our families whose children are in heaven, for the doctors, researchers, teachers, therapists and support people who have dedicated themselves to making a difference in the lives of children with PBD-ZSD and their families.
  • Jeff and I -- that we would have the strength, wisdom, confidence, and assurance that we are making the right decisions on a daily basis to be the parents that Ethan needs and deserves.
  • That through all of this God will be glorified and that people with come to know His love and grace.


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