Our Kids Blog

Kenny has been receiving physical therapy, occupational therapy, and therapy from our chiropractor pretty much since his diagnosis just over a year ago.  Recently we started Speech Therapy;  it’s not a major concern, but he is a little behind.  Things have progressed so well that as of today Kenny has reached his physical therapy goals so with this we say good-bye to Kenny’s PT Beth. She worked so well with Kenny and was always a source of reassurance for Tammy and me.

With regards to OT, Kenny works with a great therapist named Mary (we will have to get a picture of her soon). A few weeks ago Mary had us attend a special week of intensive therapy with a lady named Sheryl Field who specializes in a technique called the Feldenkrais Method. Kenny’s OT will continue the therapy with him on an ongoing basis. The therapy was great and helped Kenny’s fisted left hand to relax more.

Kenny with Miss Beth.

Kenny with Miss Sheryl.

Kenny turned 1.5 today. We’ve been working towards it this week and with tonights feeding Kenny is officially weened. Since Kenny has no idea it is happening, he seems to be fine with it. Tammy on the other hand is going to miss it. With Kenny weened, Tammy can get back on some of the medication that she has been off of for about 5 years that can help with her fibromyalgia.

Ever since we found out about Kenny’s left hand, nursing has been a time for some massage therapy. Tammy would massage and rotate his left arm and hand. We may never know how much this “therapy” has helped with his development.

Afterwards Kenny was in great spirits (he has no idea that anything is different). He had to pull off his mom’s glasses one more time as that is usually part of the nursing ritual.

Kenny had a fever of 104 yesterday, but then this morning he seemed to be doing a lot better. After his afternoon nap his fever was back up to 103.8. We decided to go into Urgent Care to get him checked over. The doctor could see that his throat was quite red and with white “junk.” He hoped that it would be strep throat so we could get him some antibiotics and be done with it. The strep test came back negative though. We left urgent care just with the explanation that it was a case of viral tonsillitis. After his afternoon nap his fever was back up and this time 104.9, so we called the on call pediatrician. Her diagnosis over the phone is that Kenny most likely has mono. High fever and sore throat with white secretions are pretty telling when it comes to mono. So the plan is just to keep him as comfortable as possible with ibuprofen and if anything changes to go back to the doctor.

Right before bed Kenny was actually doing a little bit better after a fresh dose of ibuprofen. He let us put a baby wipe on his forehead to help him keep cool.

Kenny had two birthday parties. The first one was with his friends on the night before his actual birthday. We got the house all decorated in the African Animal theme as you can see in this first picture.

Kenny just loved looking up at his big lion ballon.

For this party, we just had cupcakes. Emma helped Kenny blow out his one candle.

As you can see in the background, about 3 inches of snow is on the ground. Hope that doesn’t happen to often on Kenny’s birthday.

We tried to get a perfect picture of all the friends, but sometimes you take what you can get. This actually was the best one that we took.

In less than a week Kenny turns 1. This year has certainly been hard at times with the uncertainty of Kenny’s  health issues, but it has been a good year.  We have hope and peace in God’s faithfulness, and celebrate at the miracles that have already happened!  Psalm  139: 13-14 “For You created my inmost being; You knit me together in my mothers womb.  I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well.”

On a lighter note, since we are anticipating that there won’t be any more sunny and 60 degree days before next Saturday, we went out and took his official one year photo today. His first year frame is now complete.

Kenny is crawling. He just started yesterday. Another little miracle in this journey of closed-lip schizencephaly.

Most of you know about Kenny’s diagnosis with a brain defect (closed-lip schizencephaly). If you need any of the history you can see our other blog posts related to Kenny’s health. Since the original diagnosis the only apparent symptom that Kenny continues to manifest is problems with his left hand. Everything else developmentally has occurred pretty much on schedule. He isn’t crawling yet, but Emma was a late crawler also and Kenny is very close. Well over the summer Kenny had physical therapy, occupational therapy, and usually two chiropractic appointments every week. We were able to see a lot of progress in just his awareness of his left hand and then more. Since it has been such a gradual process it is sometimes hard for us to really be in awe of what God has done with Kenny. His lack of function in his left hand was so obvious as a 5 month old that we took him to the hospital. He has spent most of his time with his left hand in a fist, but (and for any other 10 month old this wouldn’t be a big deal) he now can do this…

Link to video here

It was another interesting day with Kenny and it did involve about 7 hours at the hospital. We are home now, he is relatively happy, and has a temp of 98.6. So things are good.

What did happen was a temp yesterday and then again today (as high as 104.1). We had a scheduled appointment with our doctor. The first concern was his left testical. He was born with extra fluid in his scrotum, which is called a hydrocele. There was extra swelling today and the concern was that one of the blood vessels might have gotten pinched off. Kenny was scheduled for an emergency ultrasound, but thankfully nothing additional was found wrong and that it probably was all of his crying that forced more fluid into the scrotum.

So with that not the problem we went to the lab where they had to take blood via a vein. Both of our children have Tammy’s small veins and Kenny was a little dehydtrated so getting the blood was not very easy. It officially only took one poke, but quite a lot of “digging” around before the lab tech finally hit the mark. (Emma once had this done as an infant and it took four lab techs and I think 5 pokes to finally get blood). They also needed to collect urine and since Kenny has yet to master peeing on demand, they had to stick in a catheter to collect the urine. Let’s just say his private parts just need a few days to recover after all they went through today.

Back to the doctors office to wait as the results slowly came in. Blood count–white blood cells slightly elevated.  Urine sample–no urinary tract infection.  Kenny crying and moaning for 3 hours and wouldn’t eat.  With all this info and no cause of the fever and the ovious pain, the doctor decides to do a spinal tap to rule out menengitis. Spinal tap takes two pokes but finally gets a good sample. More waiting for results, but as we wait Kenny eats and actually starts to get happy.

Trying to make a long story short. There are two criteria for bacterial menengitis–elevated glucose and proteins in the spinal fluid and elevated white blood cells in the spinal fluid. Kenny has the elevated white blood cells, but not the elevated glucose and proteins. As a result the doctor thinks that he probably has a mild case of viral menengitis (not nearly as dangerous as bacterial menengitis). As a precaution Kenny was given two injections of antibiotics in the small case that it is bacterial menengitis. We are home and Kenny continues to be in pretty good spirits and like I mentioned his temperature is normal. We go back to the doctor tomorrow to make sure everything still looks good. But for now we will be Praising God that will all the bad things that could have been wrong, we have a son that seems to be getting better.

We’ve seen two neurologists and a chiropractor this week with Kenny. We’ve learned some more, both good and not so good. Officially Kenny has what is called Unilateral Closed Lip Schizencephaly. This basically means that he has a cleft (crevice) in the right side of his brain where he isn’t supposed to have one. Also surrounding this cleft he has Polymicrogyria. Your brain has normal bumps (gyria) and indentations (sulci), but if the bumps are too small and thus too numerous you have polymicrogyria. So that is what Kenny has.

So what does it all mean? First he probably will continue to have problems with his left arm and hand. We will be working with a physical therapist and a chiropractor and hopefully there will be improvement. With regards to other motor skills, language, learning, etc. we won’t just don’t know what will happen. The only other major concern at the moment and for the future will be seizures. They are very likely with Kenny’s situation. Most seizures don’t affect one’s overall health, but you can pray about a type of seizure that only occurs before the age of 1 that can cause major health issues. Kenny hasn’t had any seizures yet and we are just praying that that will continue.

So what are we encouraged by? Well, we know a big God and we are thankful for him giving us Kenny and that Kenny in his hands. We (and the doctors) are encouraged by Kenny’s big head. He is in the 97^th percentile for head size and big brains with problems are lots better then small brains with problems (these weren’t the doctor’s exact words J ). Kenny’s good nature and alertness are also good things. He reacts to the world around him just as well as any baby his age. Kenny is now sitting—that’s good. I guess to just sum it all up instead of going over every detail…both doctors said that he is normal from the outside except for his left hand.

Pray that we will take one day at a time. That we will cherish Kenny as a gift. That we will entrust him into God’s hands. That we will live with peace and not worry.

Thanks for reading, for your kind words, and your prayers.

The Swanstroms

We heard from the neurologist today. Actually his nurse called us. The MRI shows that the right side of Kenny’s brain did not develop correctly while he was in Tammy’s tummy. What this means for his future development is not clear. The situation is as the nurse put it a matter of “waiting and see what happens.” On the positive side, the condition is not progressive or degenerative, so his brain is not going to get worse.

So again, just pray that we would have peace and the ability to trust. Thanks for all of your prayers. Things could have been worse, and we hope that we can remember that. He is a great baby, alert and full of smiles and laughs. We thank God for him everyday.

With love,
The Swanstroms

We didn’t find out anything new today about Kenny. We might have to wait two weeks until our appointment with the pediatric neurologist. Hopefully we will be able to get some info before that. You can pray that we would have peace and patience while we wait.

Kenny is all done with his MRI and we are now at home. Everything with regards to the MRI went smoothly and he actually seems to be back somewhat to normal (he was nice and content on the drive home and even fell asleep).

We did talk with one of our pediatricians about the scans. He said the radiologist who read the scans (so not a neurologist) said that we can rule out stroke and any sort of tumors. So that is good news. What the radiologist did see was that there are some structural abnormalities with the right side of Kenny’s brain (the side that would affect the left side of his body). What the radiologist and the pediatrician don’t know is what are the ramifications of the structural differences. We hopefully will hear from the neurologist yet today or tomorrow.

We will leave you with a picture of Kenny from the recovery room. It took a while, but he finally started to feel ok enough to give us a smile. The bandage on his right hand is just there to keep the IV in place. It kind of looked like a little cast.

Just a few things to keep in prayer for tomorrow. Kenny’s MRI is at 10:00 am, but we need to be to the hospital at 7:45 for prep and then he will see the anesthesiologist at 9:00. Since he will be put under, he can’t eat anything solid after midnight (which is actually not a big deal), but he can’t drink anything after 4:45, which is a bigger deal. We will get him up at 4:15 tomorrow morning and feed him as much as we can and hope it kind of lasts for 7 hours until he can eat again.

We don’t know how much we are going to find out tomorrow. We don’t see a neurologist until the end of the month, so we don’t know if someone else will “read” the MRI tomorrow and give us some information, or if we will have to wait. Whatever we find out we will be sure to let you know. Thanks for your prayers.

Kenny has been having trouble using his left hand to reach and grab onto things. We were in to the doctor today and they are concerned that he may have had a stroke right around the time of his birth. Kenny will have a MRI on Tuesday and this should give us some indication of if a stroke occurred. So if you could remember Kenny in your prayers. For the MRI he will be sedated, so we pray that goes well. And we are also hoping to have some clarity on what is wrong and what we should do to proceed.

Thanks,

The Swanstroms