July 24, 2012

Birthday Blessings

Ethan turned 2 years old yesterday!

We actually had two birthday celebrations. The first was on Saturday. We celebrated with my side of the family at my parents house. We had a combined birthday party for me, my cousin Mike, my Grandpa Troutt,  my cousin Callie and Ethan. We were celebrating a combined 158 years!

It was wonderful to spend the day with our family. There was tons of food, fun, and presents! Ethan even touched some cake this year and ate a few bites of coconut ice cream.

Then last night we had another birthday party here at our house with Jeff's side of the family. Our house was full of little kids. Here is the best picture of the all the cousins that were at the party that I could get. 
Our family from the Chicagoland area were unable to make it to a Monday evening birthday party, so we missed them of course, but I think I can safely say that Miles and Cora would have had a blast with all the other cousins if they had been able to make it.

We enjoyed dinner, cake & ice cream and Ethan got some new toys! One of the best things was that Ethan was really interacting with some of the other kids and following them around the best that he could. He did great except when it was time to have cake -- he didn't want anything to do with that!

During each party I got pretty emotional for a few moments. Everyone's birthday is special, but when you face a diagnosis like PBD, or other terminal illness, they can mean a lot more. I still remember like yesterday holding our little 28 day old son in our arms and learning that he had a rare genetic disease and that he had only a 50% chance of living past his first birthday and that in addition to being hearing impaired, visually impaired, physically and mentally handicapped most children with PBD do not live past the age of  ten.

What does that mean and look like for me? Of the 16 children that the GFPD knows of that were born with PBD in 2010, only 7 (including Ethan) are still alive. Of the 15 children that the GFPD knows of that were born with PBD in 2011, only 7 are still alive as of today. The GFPD has become a second family to me and we morn the loss of these children together, even if we've never met each other in person because while we may only have chatted online, we have a bond, we are a family. So yesterday as I rejoiced and celebrated my son's birthday I also ached because of the reality of Ethan's diagnosis and for all of my GFPD family whose little ones they can no longer hold, hug and embrace. 

While this is not an easy road, and we struggle a lot, but it appears that the Lord is not yet done with the mission that He has for Ethan here on Earth (or for us for that matter). 

I want to especially thank everyone that made a donation to the GFPD in honor of Ethan's birthday! You helped raise just over $200 that will go to help the GFPD support families, raise awareness, and fund research. Thank you for honoring Ethan and our family with your donation!

July 12, 2012

What does your Thursday look like?

Thursdays are almost always busy around the Marshall house. Ethan has physical therapy and occupational therapy every Thursday (unless their is a conflict) and twice a month on Thursdays he typically has his appointment with his vision therapists, and once a month on Thursdays he typically sees the dietitian. Sometimes the stars line up and we all of those on the same day.... like today - except instead of having a vision therapy session, Ethan had his first meeting/evaluation with the feeding therapist.

Here was my little man's schedule today:
9:30 - 10:30am Physical Therapy
12:45-1:45pm Feeding Therapy & Dietitian Visit
2:15-3:15pm Occupational Therapy

It was a busy, but good day, minus the fact that Ethan still isn't eating well and now weighs less than he did six months ago. The plan is for Ethan to start Feeding Therapy, two times a month, starting next month (on Thursdays - it is the only day the feeding therapist is in Decatur).

Look at what Ethan did for a few minutes today during PT! He isn't pulling up yet, but he can stand up if he can lean on something for just over a minute or so (when he wants too, of course). 

July 9, 2012


My parents were in town yesterday helping with the triathlon (they were one of the spotter boats for the swimming portion of the race) so we got to spend part of the afternoon with them. They brought a gift for Ethan. I think he likes it, what do you think?

July 5, 2012

Distracted Eating --- Don't try this at home!

As you know we've been having issues getting Ethan to eat very much over the last few weeks (he lost almost a pound this past month).

We've been working on trying to not have him have such fits in his high chair, so we recently started using it as booster seat, but that isn't always good enough for Ethan, so today we ate in the living room while playing with his jungle toy!

He had yogurt for lunch and part of his medicines. This evening we were able to get pureed "taco" chicken as well as applesauce and the rest of his medicine (minus his bedtime dose of Cystadane) in him. We were all very happy.

July 2, 2012

Ethan is a toe licker!

After two hard nights around our house, Ethan slept for almost 12 hours last night -- a huge answer to prayers! Ethan went down tonight around 10pm, so let's pray we have another full night of sleep!

This morning we had our Baby TALK Special Connections playgroup and Ethan tried to eat his friend Mason's toe! Well, maybe not eat it, but he did lick it! Mason was not thrilled to have his friend lick his toe, I mean GROSS! But that is my boy, the toe licker, gotta love him.

We also got to see Ethan use one of his newly acquired cognitive skills: they had a bus toy like we have here at home that has lights, sounds, and plays music. Ethan crawled right to the toy and pushed the top of the bus to make it play and it didn't do what he knows it is supposed to do and he was a bit upset. I know this sounds so simple, same toy, different place --- but that is actually a skill kids have to "learn." Last week when Ethan was at his grandparents's house for a bit when I went to the dentist he was playing with toys and they told me he came across the old fashion yellow ring stacker. Well, here at home we have the new one that lights up and plays music and Ethan in the past few weeks has been able to activate the toy by simply pushing the button at the top of the pole. Well, when I went to pick him up Jeff's mom and dad told me that Ethan just pushed and pushed on the top of the pole/stacker at their house trying to get it to turn on. He knew what his did at home and so he just knew that the one at Grandma and Grandpa's should do the same thing!

Why is this such a big deal to me? Because my baby is learning. It may be very slow and although he is actually falling further behind (since the expectations continue to get higher and higher) he is still learning new things in his own way on his own time. What will Ethan's fullest potential be? We have no idea. Only the Lord knows. Do I know what the research says, yes ---- 12 to 24 months cognitive ability for the rest of his life, which is likely not going to exceed ten years ---- but I try not to think every day (although it is really hard not to). Because right now, Ethan is making progress. It may be sloth slow progress, but I'll take it!

Then in the afternoon Ethan's DTH Julie came for her weekly session with Ethan. Ethan played with some different "musical instruments" today (bells, shakers, etc.) and he did great picking up each object and figuring out all on his own how to get them to make noise! We have been trying to get Ethan to search for a toy that is out of sight when it is activated (look for the noise) but he isn't there yet. We are continuing to work on developing this skill. We also talked trying to figure out how to try encourage more communication from our little man. While there are a number of things/words/signs/concepts that Ethan understand receptively, he has very little expressive language. His only signs are still "eat" and "more" and since he hasn't been eating that great he hasn't been using those for a while now. He does however know to tap the floor next to you if he wants your attention, etc. And he does babble/make a lot of noises -- both happy and sad ones, and likes to "sing" with his toys and he can keep a the beat too (pretty impressive for a kid who doesn't have a lot of "natural" hearing) but he still doesn't have any words, except for his constant "da da." That of course is not to be unexpected considering his PBD diagnosis since the majority of kids with PBD have very little expressive language, but we aren't going to stop trying to help Ethan communicate. He has played with his SLPs iPad but at this time it isn't something that we see being beneficial to him. Perhaps in a few years, but right now he doesn't have the fine motor skills and attention span required to use it as a communication device. We've also been working with pictures but have sort of had a similar experience so far, plus the fact that his vision isn't great (and he continues to refuse to wear his glasses --- when 3 adults can't get them to stay on his face longer than 5 seconds, there is no way that I can do it by myself --- I still feel lucky if I'm not having to put his hearing aids back in a dozen or more times a day) we haven't had a lot of success with that yet either. We aren't giving up on these things, but he seems to not be ready, etc. We have also been discussing trying to find actual tangible objects to use to help us communicate as well and we are continuing to sign simple words or concepts that we use on a daily basis as well. We are taking a total communication route with our little man -- we will work on and try everything, and hopefully we'll be able to find some way or a combination of ways to help Ethan express himself better someday.

Tonight at dinner Ethan had his best meal in perhaps 2 weeks if not more! He had almost 4 oz. of pureed spaghetti and then had about 2 oz. of soy yogurt! We recently removed his high chair from its base and attached it to one of the chairs so he can sit at the table like a big boy. He seems to be happier about this and while he is still not exactly happy to be in the high chair he is tolerating it a bit more. Meals are still a challenge and probably always will be, but I am so glad our little man ate a good dinner tonight. His dietitan was here last week and Ethan had lost almost a pound in the last month because of his hunger strike. So, we were thrilled at how much he ate this evening!

In other news, our GFPD family continues to grow as more families find us online. This past week we had new families from the UK and Romania contact us. I can't imagine how alone these families must feel. I mean if in a country as populated at the USA only 20 to 40 kids are born with PBD each year, the numbers can be  even smaller in countries with smaller populations. Plus, it isn't hard to imagine that in many countries around the world children are simply not being diagnosed and/or families (and even doctors) don't have great access to ways to connect families impacted by PBD or any other rare disorder for that matter. Please continue to pray for the GFPD and all of our families. Many are trying to put together some last minute fundraising to help offset the cost of conference and others are mourning the recent loss of a precious child.

Saturday night was the Mt. Zion Community Ice Cream Social. There seemed to be a really good turnout. Ethan was one of the four individuals who was chosen to be blessed by the proceeds of the event. We won't know for a couple of weeks what that will mean, but we do hope and pray that it will be enough to offset our share of the adaptive stroller/wheelchair that we will need to purchase for Ethan (insurance is supposed to help with a portion of it, but United Healthcare isn't the best, and even if they cover 80% (although we'll consider ourselves blessed if United Healthcare will cover 50%) our portion will still be significant since adaptive stroller/wheelchairs for kids typically range anywhere from $3,000 to $6,000 or more). We will be beginning the process to get his ordered soon, as it can take anywhere from six to nine months to get everything processed/cleared through insurance. While we do believe that Ethan will eventually walk (either with a walker, cane, or independently) when he goes to preschool at age 3 he must have a adaptive stroller/wheelchair for bus transportation and safety. The teachers at school will not carry him, so he must be able to either walk on his own (which includes being able to navigate bus steps) or have a chair. So, although Ethan is just turning 2 in a few weeks, the process needs to get started so that we can make sure that he will have it in time for him to start preschool in 2013!

Tomorrow I go back to the dentist to have them take another look at these dry sockets. Today has been better, although I am continuing to take ibuprofen every 4 hours. This week will be a little less busy since Wednesday is the 4th of July, Ethan won't have speech that morning and Jeff will get to be home with us for the day. On Thursday morning we'll have PT, OT, and Vision, but then no appointments on Friday.

Thank you for your continued thoughts, prayers, love, and support!