You are currently browsing the category archive for the ‘medical updates’ category.
Well, the second opinion ended up echoing the first. After reviewing the MRI scans and examining Henry, the Neurosurgeon doesn’t think that any of the cysts are operable at this time. He wants us to get another series of MRIs taken in three months to monitor their size and any growth — particularly the one in Henry’s C-spine. He also said that there must have been an injury to the brachial plexus nerves at birth because everything points to that as the cause of his non-functioning arm. He agreed with the neurologist we saw in Spokane — there isn’t anything medically to be done about Henry’s arm. Unless the Lord heals him, he will never regain the use of it. Of course, we’re totally up for that and we’re praying that way!
So that’s that. I am actually relieved to be able to bring closure to the waiting and wondering. Unanswered diagnostic questions are difficult to live with month after month. My heart goes out to families who search for conclusive answers for years. It’s a relief to be able to shut the door and move on. I kind of feel like we’ve been frozen in a place of ever-searching and never-discovering. There is so much more to Henry than all this diagnostic rhetoric that he is completely oblivious to at his age anyway. He’s a fighter and a champ. Nothing is going to hold him back — not a brain disorder, not a bum arm, NOTHING!
I’m also looking forward to jumping back into some areas that have been set to the side during this season. I’ve been so focused on the medical end of things… now I can jump back in and rekindle some thoughts and ideas that have just been waiting. Maybe I’ll finally get to finish the zillion half-written posts that I’ve started over the last few months as well!
Anyway, thanks so much for the comments and the encouragement. I know it doesn’t seem like much to write a couple of sentences, but really, it’s meant the world to me. I feel like I’ve been able to process everything and I am grateful for the closure at this point. I am continually blown away by the Lord’s goodness to us. We don’t deserve any of it. We brought Henry home really not knowing anything — and even though it’s been a bit of a ride… now we know. We KNOW what’s going on and we know what the next steps are. That’s a huge blessing.
We’re headed to Seattle again today for one more appointment for Henry. This is a second opinion appointment with a pediatric neurosurgeon at Children’s Hospital. It’s really a miracle that Henry got a meeting with this surgeon on such short notice. He actually created this appointment’s time slot specifically for Henry since he is leaving later in the week for several months teaching in Japan. He wanted to see Henry before he left and we are so, so grateful.
It can be hard to keep track of all the medical jargon… so here’s a quick refresher: The second part of Henry’s recent diagnosis was the series of cysts in his brain and spine. We were given the first opinion that there really isn’t anything to be done about them at this point; but we’re following up on it because one of the doctors that Henry saw months ago in Seattle thinks there could be another condition causing the series of cysts (and that it could be surgically treatable.) He referred us to the neurosurgeon that we will be seeing later today.
Anyway, we would really appreciate prayer for this appointment. This is kind of like the last strand of hope we have that any part of Henry’s condition is treatable — or that he’ll ever be able to use his left arm. This appointment is a big one — we need to hear someone else’s opinion about the cysts and we’re praying that this second opinion will give some unexpected hope.
Thanks!
Ah, finally — it’s taken a while to be able to write that title! Those of you that have been following along since the beginning of our journey to Henry are probably very ready for this post. Enough of the diagnostic roller coaster!
It’s been over a week since our meeting with the pediatric neurologist to review Henry’s MRIs. We’ve just been processing and felt like we needed to take some time to talk and figure out where to go now with the information we were given. Of course, as I have said many, many times before it’s JUST a diagnosis. It doesn’t change WHO Henry is, or how much we love him, or how we treat him or think of him. Our pursuit of a conclusive diagnosis was primarily so we could effectively treat the roots of his symptoms (if possible.)
I realized yesterday that it has been almost a year since we first felt drawn to Henry and began researching possible medical scenarios for his symptoms. A whole year! Unbelievable. The last twelve months have been filled with conflicting diagnostic reports –so it’s a blessing to finally have the official word on what is really going on inside our little boy’s body. In one way I am relieved to finally KNOW; in another way, I am processing the emotions that come with finally knowing.
The MRIs that Henry had six weeks ago revealed a lot going on inside his brain and spine; and it’s nothing we had researched or considered. We aren’t completely settled with part of the diagnosis and plan to get a second opinion from a pediatric neurosurgeon in Seattle; we also aren’t sure how everything will affect him in the future, but for now at least we know what we’re looking at.
Okay, so here are the facts in a nutshell (there are other things, but these are the primary findings of the MRIs):
We found out that Henry was born with a rare brain disorder. He has both pachygyria and polymicrogyria which are neuronal migration disorders. At some point during Henry’s second trimester of development in utero, his mother suffered some kind of trauma. This trauma caused the brain cells that were migrating out from the stem of his brain to grow abnormally. The brain is normally full of creases and folds (gyri) but Henry’s brain (primarily the right side) grew without the normal amount of creases. In some places the gyri are smaller and more plentiful than normal (polymicrogyria) and in other places the gyri are larger and more shallow than normal (pachygyria). This is obviously simplified greatly, but it gives you the basic idea of what this disorder looks like.
The primary effects of Pachygyria and PMG are developmental delays, motor dysfunction, respiratory problems and seizures. Obviously the symptoms vary from child to child. Most children with these disorders are affected in a more obvious way than Henry seems to be. But on the other hand, most children that have had the MRIs to diagnose these conditions have substantial enough symptoms to warrant a thorough evaluation. There may be many other children who are affected to the extent that Henry is but have never been diagnosed because of the lack of presenting symptoms. We would not have discovered this brain disorder if we had not pursued the MRIs because of his left arm being non-functioning (which turned out to be from a different cause all together.)
Pachygyria and polymicrogyria are obviously permanent — but thankfully not degenerative. However, we really can’t know now how they may affect Henry down the road. For now, it appears that Henry has no difficulty with learning or language (he’s actually way beyond his age in his language skills) but he may have a problem in a few years when he starts learning math, or he may run into a block when it’s time to ride a bike… any thing at any time could be difficult for him to learn as a result of the abnormality in his brain — and there is just no way for anyone to predict it now. The weakness in Henry’s left leg and his difficulty balancing are a couple of symptoms — but the neurologist was actually really impressed with Henry over all and said that it’s amazing (based on what he saw in the MRI’s) that Henry has such a lack of the common symptoms associated with this condition.
He did want us to be fully prepared for the possibility of seizures in the future. He said that just because Henry has not had any seizures so far isn’t a sign that he will never have any; they are very common with both disorders and he wanted to be sure that we understood that. He also wanted us to understand that repetitive seizures can bring about more serious complications in the brain. He didn’t want to alarm us — but we needed to know, and we appreciated his frankness. I am trying to balance being aware of the possibility of seizures without being too paranoid, you know?? I don’t want to be the mom that duct-tapes pillows on my son every time he goes outside — I mean, he’s a BOY for Pete’s sake… and we live on a FARM… surrounded by forests full of trees to be climbed and forts to be made. But, on the other hand, I want to live in the reality that my son has a much greater chance at having an unexpected seizure in the middle of an activity than the average child does. I need to protect him from the possibilities. I don’t want to hold him back from living life as fully as possible — but I am responsible for his safety.
Okay, enough rambling there…
So that was the first part of the diagnosis. We also found out that Henry has a couple of arachnoid cysts at the base of his brain, and a pineal gland cyst in the center of his brain. The medical community is split as to the treatment of arachnoid cysts. Some doctors feel that they are best left alone unless they are causing symptoms; while others feel that they should be removed to avoid any future issues. The pineal gland cyst is actually already beyond the “safe” size range, so we are going to have another MRI taken in six months to see if has continued to grow — we will cross that treatment bridge then.
Henry also has a large cyst in his cervical spine that appears to be compressing the spinal cord. This seems to be the root cause of his non-functioning arm. At first we were encouraged by this diagnosis because it seemed to us that by removing the cyst and the pressure on his nerves, there would be a good chance that some function could be restored in his arm. However, the neurologist said that the cyst was most likely there while the nerves were developing, so they never got the chance to develop properly — it acted as a road block preventing the nerves from doing their job from the very beginning. If this is the case, then surgery wouldn’t do anything to restore the nerve function because they grew abnormally. It is also a risky area of the body to do any kind of surgery because of the complexity of the nerves.
Like I said before, we are going to be following up with a different neurosurgeon about second part of the diagnosis. We’ve spoken with someone from Seattle who is suspicious of another condition causing the series of cysts. It may be that Henry COULD regain some use of his arm through surgery, and we really feel like we need to get a second opinion about it. We feel settled about the first part of the diagnosis, but there are still enough questions about the cysts to warrant some follow-up research.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Okay, so those are the medical facts. I’m just continuing to hold Henry and this diagnosis out to the Lord. I KNOW that God is big enough to heal Henry and I’m certainly praying for healing –especially of his arm. But on the other hand I am really aware right now of how finite my perspective is. So often I think in terms of “good” news or “bad” news (as far as a diagnosis) and what I’m not factoring in is that it is ALL God’s news — whether it is “good” or “bad” in my eyes. He is completely sovereign and knows the beginning from the end — and the things that seem to be the most difficult in my perspective are sometimes the things that he uses to bring about the greatest changes and the greatest good. He truly works in mysterious ways. I wouldn’t choose something like this for my child if I were given the option, but I want to raise Henry with the perspective that he is whole RIGHT NOW. He is not flawed or imperfect. He has some physical handicaps that may make things harder for him, but his story — the story of his life from conception to death — is known and has been orchestrated by a loving heavenly father… every single piece of it. It’s hard for me as a mom to think about the things my son may face, just as it’s hard for me right now to watch him struggle so much with things that come easily for children with two working arms… BUT, I see such sparkle in his eyes and such tenacity in his heart and I pray above all that he will keep that sparkle and that he will stay soft and not get bitter about his handicaps. I pray that he will always try his hardest and throw his heart into life, accepting the things he can’t do with grace while vigorously pursing the things that he CAN do. I pray that he will be a glass-half-full type of person.
It’s actually been harder for me to process this diagnosis than I was prepared for.. and I finally realized it’s because I am his MOM now. I was fully and completely prepared for this sort of diagnosis a whole year ago, and I stayed “prepared” through all of the initial meetings with doctors and the referrals from one medical specialist to another. But somewhere in the midst of all those appointments and tests, this little boy became my SON in every sense of the word. When I sat in that room with the neurologist reviewing the MRIs last week, we were talking about MY son. Aahhhh. The transformation that happens to our hearts when we become mothers is remarkable. I have been going through all of the emotions of processing this diagnosis as if I were hearing for the first time that my son has a neurological disorder; I’m hearing it and processing it as a mommy, not as a prospective adopting parent. It’s so personal now. I’m glad I finally realized my need to process it as such because then I felt released to grieve for what I needed to — just as I would have if Joanna had been diagnosed with a rare brain disorder at twenty months.
Before I close this very long post, I just have so say again what an AWESOME kid Henry is!! I can’t say enough about how grateful I am to have been blessed with the amazing privilege of just knowing him… much less the indescribable joy of raising him!! I realize more every day how amazing God was to lead us down the twisty road to a little country on the west coast of Africa and to this little peanut of a kid with an unknown medical condition at the time. He brings such life to our family!!
Thank you, God, for my beautiful son.
Just call this a completely random post! It should be separated into two or three individual posts, but I’ve not had the time to write them separately, so united they shall be.
First of all, please continue to pray for Henry’s sweet Liberian “foster sister” Ellie. She is still in ICU from major surgery last Wednesday and her body needs to heal up to prepare for more surgery next week. It has been heart-wrenching to read her mom’s account of this difficult process. I can hardly imagine how difficult it must be for them. They so appreciate all the prayer being offered up on their daughter’s behalf — please continue to pray, and if you don’t know her, please take a moment to jump over to her mom’s blog.
As far as our week has been… (oh, wait, is it already the start of another one??? Where DID the last one go??) Henry went in for his MRIs on Thursday morning. It took a lot longer than we thought it would and he ended up being “under” for almost four hours — but supposedly they got all four scans and hopefully we’ll hear very soon about what’s really going on inside that brain of his. He was so confused and disoriented when he woke up in the recovery room. He didn’t seem to recognize me at first and was crying such a sad little cry — it was hard not being able to comfort him and I was relieved when he was finally aware enough to know me and be comforted. Thankfully he had no negative side effects from the anesthetic and he was back to his usual LOUD jovial self just hours later! 🙂
The MRI’s were done in Spokane and we were there several days; but we’re back home now, and hopefully will be able to stay home for a while! I can tell that all the traveling we’ve been doing lately for Henry’s appointments is starting to catch up with the kids. We need a little down time to re-establish some rhythm and routine.
Last week we had the privilege of meeting an awesome woman and I wanted to share a link to her website. She started a small orphanage in Mozambique a few years ago and currently takes care of forty kids. She takes in older children, and they have become like a large family. We were invited to listen to her share at a local church and I am SO very glad we went. She has such an amazing heart for Africa and she is so humble and real and strong all at the same time. It was a huge blessing listening to her share stories about the kids in her orphanage and the ways God has provided miraculously for them. She went over to Africa with a strong call and vision to start an orphanage, but without really knowing how things were going to unfold. The story of how the orphanage came to be is so inspiring. We were able to spend some time talking with her afterward and it was one of those connections that we knew immediately God had orchestrated. She told us to come on over to Mozambique and spend some time at the orphanage and we told her we’ll see! We are still just seeking God about the next season of our lives. We feel like we’ll end up in Africa for part of it… but we really want to be sensitive and walk through the right open doors. Anyway, here’s the link to her web-page. http://houseofblessingmoz.com/index.html
Peter and I are still researching and writing plans for the non-profit business (Liberia-related) that we’ve spoken to several of you about. We are getting pretty excited about it and are trying to finish all the paperwork soon so we can share more. Check back for an update next week! (How’s that for a shameless plug? 🙂 )
(Wow — this IS a random post! I warned you!)
I loved the feedback on my last post — I was surprised by all the enthusiasm toward green smoothies and rawness. Yay! We decided to start our raw week today, so we are officially on day one of 100% raw and we’re feeling great (other than typical bizarre cravings…) I will try to post recipes soon — on-line accountability always helps with dedication and enthusiasm! 🙂 — but I won’t complicate this random post further by sharing now.
And finally, I’ve been wanting to share this little video clip from our day up at Red last Saturday for all you boarders that didn’t make it to a mountain this season (especially you, sis — I’ve missed you this year!) We took the camera to shoot some video for Jo to show her where mommy and daddy go all day with our funny boards (she’s fascinated by them.) She loved it! The video is really bumpy and the quality is not-so-great, but oh well — we’re total amateurs at filming. You get the point. This is a chunk from the middle… heading out toward Roots and Cambodia for those that know the mountain (the names of back-country runs crack me up… “needles” “shoots” “beer belly” “cambodia” “ledges” — who names them anyway?)
Well, I guess I didn’t do a very good job communicating earlier about Henry’s appointment. I had several people ask for clarification. I’ve talked to so many friends and family in person about it that I forgot to be really specific for those that just pop in here every now and then…
So here goes:
The bottom line is that it looks to the specialist that Henry’s non-functioning arm is the result of nerve damage in the shoulder. He is not a candidate for nerve surgery; so unless a miracle occurs, he will never regain the use of his arm. The damage is permanent. We are getting the MRIs this week to find out “officially” whether there is any brain damage causing additional issues in his body (resulting in Cerebral Palsy.)
Hopefully that is more clear. When I said I was processing, I meant I was having to deal with the reality that it’s a permanent condition. We’ve been trying to hold on to hope and stay optimistic that therapy and/or surgery would help him regain even just a little use of it. Like I said, I have thoughts that I will share later…
Right now though, I’m going to follow up on a fun tag! Brandi tagged me to share ten random things — and I probably would have passed if it had been about me (since I am sure you have had all you can take of random Amberness between my 100 things and the weird tag!) but I couldn’t pass on this one since she said to include Peter. I don’t write enough about my husband on here… so in no particular order, here are ten random things about him:
1.) Peter twirls his hair when it’s long enough. Drives me nuts, so I always bug him to get it cut and keep it short. I have come to realize after five years of marriage that it is a completely unconscious habit — he really can’t help himself! 🙂
2.) He was born and raised in Phoenix, Arizona. I think this contributed to his ability to thrive in really hot weather and his love of Mexican food.
3.) I always tease him that he must have been born with a phone on his ear! Seriously, the guy is a communicator and is on the phone a LOT (most of it is work-related, although sometimes he talks to MY friends for a while before handing the phone to me!) It actually works out pretty well for us, because I am not much of a phone talker — so it balances out in the end. At least I always know I can get in contact with him if I need to!
4.) He is a chronic sleep-walker and sleep-talker. At least once or twice a month I wake to him saying something totally off the wall in his sleep — or else getting dressed because he thinks someone is in our house at three in the morning! I have had some FUNNY conversations with him that he totally does not remember!
5.) Peter loves people and is one of those kind of guys that makes friends instantly. He just knows what to say to put people at ease and he genuinely enjoys meeting new people and developing new relationships. He is really great with kids too — they instantly warm up to him. I think part of it is because he is definitely still a kid at heart.
6.) He has a great sense of humor and has such a contagious laugh when something strikes him funny. I crack up just listening to him.
7.) Peter plays the keyboard off and on with one of our worship teams at church. He also heads up the sound team. I think it’s great that he knows what all those knobs and switches control on the board and that he can mix sound… it seems really complicated to me.
8.) He’s pretty opinionated and if you get him started you’d better be ready for a lively discussion! (very different from my peace-maker personality…) He loves listening to talk radio and calls in! Yes — he is that crazy Peter from WA state that you may have heard on the air… Ha! :0)
9.) He has blown out both knees on separate occasions (one while playing soccer, one while snowboarding.) After a couple surgeries, he’s back to both sports — albeit carefully! He also has two herniated discs in his lower back from an injury in high school. I am amazed by how much he does with chronic low back pain. You really wouldn’t know it by how active he is.
10.) He’s very optimistic and willing to takes risks. I love that he thinks outside the box and is adventurous enough to approach things from an unconventional standpoint.
So there ya go… a little randomness about my hubby.
Okay… first things first.
Before I share my millions and millions of pictures from our road trip and weekend with the Z’s (well, actually, not QUITE that many pictures — but close! 🙂 ) I need to do a quick update on Henry’s medical appointment.
First of all, thanks to all who e-mailed and called to let us know that you were praying. We so appreciate our friends — the e-ones and the ones in person…
We feel so fortunate to have been able to see this particular specialist. It was a small miracle that Henry was able to get in on such short notice… and we are very aware of that. I ended up staying back at the hotel with Joanna on Friday morning while Peter took Henry to the doctor, so this is a second-hand update. Peter was very impressed by how thoroughly the whole team handled the appointment. Henry was evaluated, examined and observed by several key people who have helped a lot of children with BPI injuries.
At the end of the evaluation, the specialist said that he did not feel Henry is a candidate for nerve graft surgery. Not only is he past the window of time, but it is a severe brachial plexus injury; so in all reality, he most likely would not ever have been a candidate, even if we had brought him home sooner. The doctor did say that he still wants us to get the MRIs done and he will look at them closely to see if he has missed something. I guess there is also the possibility of a tendon surgery in Henry’s hand down the road that might give him some limited use of his hand (some opening and closing function) — but he has to be a little older before we’ll know about that one.
The specialist agreed with the general opinion of the doctors at Shriner’s — he doesn’t think Henry has CP either. He said that the weakness in Henry’s left leg is likely the result of additional nerve damage in his spine… as is the slight head tilt. (Actually all of Henry’s CP symptoms are also classic symptoms of spinal nerve damage — we won’t know if it’s cerebral damage or nerve damage until we get the MRIs)
The surgeon wants to look over the MRI of Henry’s spine to see if there is any possibility of nerve surgery for his leg, but he said that he felt Henry will be walking without a limp even if he does nothing (*little side note: Henry’s now taking five or six steps independently many times throughout the day — he will be running by summer at this rate!!)
So… that’s that.
I have lots of thoughts… but I am still processing and praying and will probably ramble about it some time in the future.
Skyward Journey 