Monday, January 21, 2013

It has been awhile...

Hi friends,

It has been so long since I've blogged that I am not even sure where to start!

Jude has been a busy boy and he is certainly keeping us busy too!

Let's go with some bullet points to start "catching up":

- Jude started crawling! He started crawling right around Christmas and hasn't slowed down since! We honestly did not expect him to meet this milestone this early. We are blown away by this determined little man! Right now his favorite thing to do is crawl into Annabelle's room and get into her toys. And she welcomes him with joy (most days)!

- A week or so after he started crawling he started pulling up in his crib! Then he slowly built up enough confidence to pull up on furniture. At this point we can count on him to pull up on anything and everything. He has NO fear! He is such a busy little man and it is hard to keep up with him! In recent days he has started pulling up and holding on to the furniture with just one hand. We are so proud of him and so thankful for the Lord's work in Jude's physical abilities!

- Jude is now seeing several local specialist. He is still being followed by Jude's surgeon, Dr. Hebra, (bless that man!) and his team (bless them too!) and we will continue to visit him for all of Jude's follow up surgical needs. Currently Jude is seeing physicians from the following specialities: Pulmonology, Neurology, Allergy, Audiology, Ophthalmology, Gastroenterology, Developmental Pediatrics and he is followed by the surgery team here for management of his g-tube. He saw a local cardiologist but he was released from his care because Jude has no signs of pulmonary hypertension! Yes, you read that right....that beast of pulmonary hypertension is GONE. Praises all around for the Lord making it so!

- So, here is the scoop on Pulmonology: Jude's docs are happy with how his little lungs are handling life right now. They stressed to us the importance of trying to keep our little guy well during the cold/flu months and encouraged us to keep him out of the public eye until Spring. They simply want to give Jude's lungs more time to grow (especially that little left one) and rise to the respiratory challenges ahead. Many of you have asked, "well, isn't it better to expose him to germs/illness so that he can build immunities?" The answer is "yes"....but the better answer is "yes, when his lungs are stronger and capable of handling a respiratory illness." Thus far Jude has remained healthy and feel from illness through cold/flu season (and all of us have too....except for a tiny cold for Annabelle). Will you pray for continued good health for all of us? To be honest this flu season has us really freaked out. We know many people who had flu shots but still got the flu....and we just don't feel quite are protected as we'd like to be.

- Neurology: Jude recently had a sedated MRI to get a better look at Jude's brain. First of all, thank you to all of you who were praying for this procedure. We were so worried about our little guy being sedated and we were also told that there was a small chance that he would need to be intubated for the procedure. Thankfully there was no need to intubate Jude and he handled the MRI beautifully. In the past Jude has only had head ultrasounds. As mentioned before, Jude has what is called ventriculomegaly. And as we've shared before ventriculomegaly can lead to hydrocephalus. If a child has hydrocephalus it can require brain surgery and placement of a shunt. The main reason for Jude's MRI was to get a look at Jude's ventriculomegaly to make sure that it was not becoming hydrocephalus. Thankfully the results revealed that Jude does not have hydrocephalus. We also learned more about the impact of Jude's complicated medical course on his brain. It is quite hard to explain, so if you'd like to know more please feel to shoot us an email or ask us in person.

- Allergy: So, not long after we moved back home I started trying to get Jude to taste some strawberry yogurt. After his first taste test we noticed that he has a splotchy rash on his face. I worried at first that he was allergic to strawberries. But after trying plain vanilla yogurt the next time I began to think we might be facing a milk allergy (as suspected many, many months ago in the NICU). What struck me as strange was the fact that he did not have any GI reactions. So, for the next several days I would smear little bits of dairy on his face to look for a reaction and sure enough....the rash would appear. So, I spoke with our awesome pediatrician and we got a referral to an allergist. And sure enough, our boy has a dairy allergy. At this point it is not a huge concern because...well....the kiddo isn't really eating much by mouth. But when he does we will have to figure out a non-dairy diet for our little man.

- Audiology: We haven't seen the docs to check on Jude's hearing (we actually go Wednesday) yet. But at this point we don't feel concerned about his hearing. If he has hearing loss it must be very mild. In the past Jude has passed his hearing tests with flying colors. However, we will have Jude's hearing checked for several more years because ECMO can cause late onset hearing loss. And since Jude was on ECMO for 23 days hearing loss is certainly on our radar. Will you join us in praying for this upcoming appointment? We are also thankful that the doctor we will be seeing is one of our dear friends!

- Ophthalmology: Jude has mild strabismus in both of his eyes (learn more HERE). At this point his doctor does not think that Jude needs surgery or patching. We have a follow up visit in 4 months to evaluate how his eyes are doing. (We'd love to hear from other families who have children with strabismus about how their child progressed with this diagnosis)

- GI: Jude is still g-tube fed. When he turned one year old he was switched from infant formula to pediatric formula. Currently he receives 4 feeds a day and 3 60cc boluses of water. He is a big boy weighing in at 24 pounds and he is currently wearing 24 month clothing. We are certainly thankful for his size and growth. Many CDH kiddos struggle with weight (although most of them don't have g-tubes to help them along). At the end of next month we will be meeting with a nutritionist to discuss Jude's future nutritional needs. I am hoping to discuss switching Jude to a blended diet with our new nutritionist. I feel very drawn to giving Jude real food blended to meet his nutritional needs and I feel like it could greatly benefit him in many ways. Will you pray for my research and preparation for this upcoming appointment?

- Developmental Pediatrics: At this appointment we discovered that Jude is now functioning at a 10-12 month old level developmentally. (He is 13 months old) Not bad for a kiddo who spent the first 6.5 months of his life in a hospital! My sweet boy is kicking some booty!

- Feeding: Jude is still not eating by mouth. BUT! He is making little baby steps towards filling his tummy via his mouth. A few weeks ago Jude had a swallow study completed to make sure that everything was working correctly from a mechanical standpoint. Our awesome OT wanted to make sure that Jude was capable of swallowing and that there were no muscular difficulties, etc. After a very traumatic swallow study (imagine a screaming baby with barium all over him being force to swallow, a.k.a his greatest fear and a nearly in tears mommy desperate for answers) we discovered that Jude is FULLY capable of swallowing. Everything looked normal. So, at this point our challenge is to get our little guy willing to eat. He is physically capable he just has to decide that he wants to. These last few weeks we have been working to reward Jude when he swallows his food and we have been encouraging happy table/food time during our family meals. Jude always plays with his food, spoon, cup and bowl while watching all of us chew and swallow our food. Recently, he has taken to nibbling on a few types of food and we are so excited about his progress. It will be a long, long journey but our OT assures us that one day Jude will eat. Until that day, pray for our little boy! We are so thankful for your prayers!!

So, what else has Jude been up to?
- Celebrating his 1st birthday! He had an awesome superhero party surrounded by our closest friends and family. Jude played with his cake a little bit and tasted a little bit of the icing on his lips. And we were THRILLED by the donations that were given to Cross Bridge Ministries in honor of Jude! Thank you!!!!
- Living in isolation since early November. Jude mostly stays home (as do we) to limit his exposure to the outside world. This cold/flu season seems especially serious so we've tried to be very thoughtful about what Jude might be exposed to. We go to church (arrive early to get a few seats all to ourselves and leave early) and to the grocery store (cart is scrubbed, cart cover placed and hands sanitized multiple times) and an occasional dinner out (table and highchair scrubbed, chair cover placed and hands sanitized multiple times) but that is ALL. There are certainly times when we all get a little stir crazy but we remedy that with a walk, a drive or at fun at home activity.
- Soaking up Christmas and time with family. We had a nice Christmas meal with Brian's family and a quiet Christmas eve and Christmas day at home as a family of four. I'm not sure that I've ever savored a Christmas this much before. And Jude (and all of us of course) traveled to Florence for a visit with my (Rose's) family. Jude loved his first "visit" to Nana Beth and Papa Jack's!
- A lot of therapy appointments (we seriously LOVE our OT and PT)!
- Playing with Annabelle and making her laugh as much as possible!
- A lot of snuggles and kisses from Mommy and Daddy (when he can stand to be still)!

And now that I am at the end of this blog post I was planning to post pictures of the last month or so....but I just tried to and it appears that blogger has changed their settings for posting pictures and I cannot figure out how to load my photos! Ug! Frustrating.

I promise to try to tackle this problem tomorrow so that I can share some sweet Jude photos with all of you!

As always, we covet your prayers for Jude. We are so thankful for your desire to know about him and how he is progressing. We are thrilled with all that the Lord is doing in Jude's life and ours.

God bless you all!

1 comment:

  1. Rose....
    Hello there!! I am so glad that your computers are back up and running properly!! Because I like this Blog!! ;)
    Jude is crawling and pulling himself up?! What a smart, determined little man!! ;-D
    Protecting Jude from illness and germs is a very wise choice!! Do not ever doubt that!! Any common cold could be critical for Jude.... I understand. Trust me. I do. My Mom probably did the same for me. ;)
    Yeah, Blogger is a huge pain sometimes. It's constantly changing settings and such!! :-(
    Wow!! The Lord is truly working healing in Jude's little life!! "Praise God to Whom all blessings flow...." ;-D