Head to Toe {An Adelaide Update aka You Will Need a Snack…}

adelaide on couch update

This update is way overdo. And it will be a lot for you, the reader and prayer warrior, to process. I apologize for the massive amount of information. And I recommend grabbing a snack. And some freezer chocolate.

It is not an easy thing to write. I have spent several days mulling over everything. The large words. The even larger consequences of those words.  Last week, I spoke to very few people, and didn’t do very well with them. This week, I did much better! Part of me still just wants to keep it all to myself, but I discovered that 6 people found this blog last weekend by searching for two of Adelaide’s disabilities in Google. So, not only is this therapeutic…cathartic…for this mama, but I feel it is almost necessary to share what we know. Or think we know. Or what we have ruled out. Adelaide is not the only baby with her combination of issues, but I couldn’t give you a number or a percentage. It can’t be wrapped up in a pretty paragraph package. And there aren’t walks or fundraisers or colored ribbons. If other parents can read this and glean one thing, I will be blessed. {Or, they will skip to the potty-training posts and send me flowers.}

Brain

The first MRI (September 2012) was pretty ‘crude’…a neuroradiologists words, not mine…and gave us fuzzy images and even fuzzier information. She was believed to have a posterior fossa cyst that was likely placing pressure on her occipital lobe. Last week, Adelaide had a new MRI done at Children’s Mercy. The equipment is designed for the tiniest of babies, so our images were amazing. And we learned several new things about her brain.

  • Adelaide’s mega cisterna magna does NOT contain a posterior fossa cyst and there is no pressure. The large space is unchanged from her last MRI. It happened during brain formation in the womb…it was not environmental or an effect of a genetic disorder. It just happened. There was a deviation from her DNA. It cannot be fixed, but it is not going to get worse.
  • Adelaide is missing brain matter. Again, it was a deviation from her DNA. She will not lose more, but she will not gain back what was lost/never made. Her white matter is missing or thinning in her posterior {hence the mega cisterna magna} & corpus collosum. Her brain may be able to compensate for what is missing by making new paths. We just won’t know until that does or doesn’t happen.
  • Adelaide has bilateral colpocephaly, which just means her ventricles are enlarged because they are missing matter. Again, a deviation.
  • Polymicrogyria. The squiggly {very technical, I know} surface of Adelaide’s brain has an abnormal pattern. Another deviation. We are not yet sure to what extent this will affect Adelaide’s development. 
  • Adelaide’s pituitary gland is flattened against a bone. A deviation that may cause several issues or may not affect anything. We are waiting to hear back from an endocrinologist about necessary bloodwork.

It is a waiting game to see the extent these brain abnormalities will continue to affect Adelaide. We are praying for the good parts of her brain to compensate for the missing. The worst case scenario is actually pretty good. None of her issues are degenerative. So, she may stay at her current level, but she won’t regress. That is a praise…wrapped up in some, otherwise, very difficult findings.

We went back up to Children’s Mercy a few days after our MRI trip to do some neurophysiology tests. A very sleep-deprived Adelaide was hooked up to electrodes, wore headphones & goggles, and slept for 2 hours while sounds and lights went off. We get the results early this week. These tests will let us know if her brain has already started compensating by creating alternate pathways. There isn’t anything we can do if it’s not, but at least we will have some additional information.

Eyes

We had an ophthalmology appointment in Springfield…between our two Kansas City trips. {Adelaide should get a medal for surviving 3 trips in 6 days. Seventeen appts/procedures in April alone…} We received the excellent news that Adelaide will have eye surgery this summer to correct her esotropia! Her optic nerves and pupils are perfect, but her muscles need to move about 6 millimeters each. The surgery is quick and recovery is just a few days at home with some eye drops. Since Adelaide hated her glasses, and I knew they weren’t really doing much at all, this was exciting news! Then, we realized she cannot have another surgery until her pituitary gland and hormones are checked. Remember? It is flattened up against that bone. So, we are waiting for the endocrinologist to order bloodwork, so Adelaide can either be cleared for surgery or receive medical treatment. We are praying for clear bloodwork, so Adelaide can see! An unrelated ophthalmology fun fact: Adelaide was nursing, uncovered {because she’s my second baby…it’s the truth}, and our ophthalmologist knocked and walked into his office. Adelaide, who was 12 months, unlatched to greet her new friend…as I flashed him. “Whoa. Put that thing away. Your file says you’re married.” By far THE best response I have ever received. This last visit, I prayed he wouldn’t remember. He walked in, pinched Adelaide’s thigh, and said, “Not eating today?” Of course he remembered. At least I made an unforgettable first impression.

Ears

They are cute. At this point, there are no issues with her hearing. I also want to get them pierced, but it has been helpful for them to be metal-free for all her tests. But, we all know she would look gorgeous. Am I right?

Mouth

  • Teeth: Adelaide now has 10…including all 4 1-year-old molars! We weren’t sure she would get her teeth on a normal timeline {because she is still eating mostly pureed foods}, but they are coming in at record speeds! And she is even learning how to use those molars! She is also eating some table food that hasn’t been pureed. We just need to be very careful, because she will become constipated and could need hospitalization. She cannot move enough to keep her intestines moving.
  • Speech: She babbles and squeals and still says only a few words. Seven in total, but some she says maybe once a month or quarter. She gets a speech evaluation in December. She will definitely need speech therapy. I have some training in speech therapy and language development, so that is a blessing.

Nose

Also cute. Super cute.

Neck

Adelaide’s neck is getting stronger, which is a tremendous blessing! It is holding up a head that measures in the 50th percentile. At least her head is covered in adorable hair! {And I was finally able to win the year-long battle against cradle cap. For the win!}

Shoulders

Shoulders are also getting stronger! Adelaide’s physical therapist is very encouraged by the progress we’ve seen. We are also seeing some benefits from the Theratogs Wunzi System, since it goes over her shoulders. Adelaide’s shoulder strength is at a 4-6 month level right now. She had zero strength in her shoulders just 6 months ago.

Chest

  • Muscle: Although we have seen progress during physical therapy, Adelaide’s chest is still extremely weak. She doesn’t have any muscles to push herself up, so all that work falls on her arms…which are not very strong. {Sorry, dear, something you inherited from Mommy…} Crawling won’t even be a reality until Adelaide can develop some chest muscles. And strengthen her shoulders. And gets some muscles in her arms. And the list goes on, which is exactly why we don’t even talk about crawling right now. We just talk about learning to sit independently.
  • Respiratory: Since Adelaide’s breathing was shallow during the last MRI, she developed a few {hopefully} short-term respiratory issues. She now has a rescue inhaler and a mask. We are doing some breathing treatments to alleviate the wheezing, which was also leading to coughing, choking, and aspirating.
  • Anatomy: Graham is obsessed that he and Adelaide both have nipples. So, he tells strangers that “All peoples haves nipples. Adelaide has nipples and I haves nipples. Mommy has food nipples. For babies.” It makes running errands very interesting…

Arms

Adelaide is developing some strength in her arms, but not as much as we had thought she would have by now. We are excited about any progress…and the fact that she hasn’t regressed. Hearing “There has been no regression.” is like hearing “You won a BAZILLION dollars!” in the hypotonia community. Adelaide is still learning to use her arms to prop herself up, catch herself when she falls from a seated position, and use them to push herself up off the floor. Oh, and they are gloriously chunky. It probably doesn’t help her at all to have such thick arms, but I love them.

Hands

Adelaide has petite hands. She uses them to shake rattles and toys {woohoo!} and grab food {even bigger woohoo!}. Although she still lacks any pincer grasp, she is able to self-feed now. Just in the past few weeks, she has figured out how to grab food and work it from the palm of her hand to the space between her thumb and pointer finger. Then, she twists it into her mouth. She is pretty impressed with herself. She has a success rate of about 75%. She still receives most of her food via spoon. I often think about the day she will be able to hold her own utensils. Right now, she just uses them as eye surgery instruments…

Belly

  • Muscle: Adelaide’s belly seems big {she is wearing 24 month pants for her girthy-ness}, but there are very few working muscles in there. She is making progress every week, but is still in the 5-6 month old range for trunk/abdomen strength. She is trying to get herself from her back to a seated position, but still lacks the core and arm strength to make it happen. Again, she has not regressed…so that is awesome!
  • Digestive: Adelaide still eats mostly pureed foods. I love making baby food, so this hasn’t really been a challenge or a burden at all. We incorporate prunes, apricots, or applesauce into every meal. This keeps her gastrointestinal system running smoothly. Adelaide loves to eat. The girl would just eat all day if we allowed it. Obviously, we don’t allow it. But you wouldn’t know from her thighs.

Back

Adelaide just recently started wearing an orthotic. She now dons the Theratogs Wunzi System. We saw improvement in her posture and balance within 5 minutes of wearing it. Without it, Adelaide tends to flop over face-first and almost fold in half. While wearing it, she was able to sit up straight and play. {FYI: The system is almost impossible to get through insurance if your child doesn’t have Cerebral Palsy, so we ended up paying completely out of pocket and bypassing insurance. We received a large discount and received it within 10 days!} We have a weird situation with Adelaide’s back. Specifically her lower back. Her doctors and therapist are not yet sure if she has spinal damage from a DNA deviation or if she is just having temporary issues with her curvature. If it’s the first scenario, we are keeping her from experiencing more spinal damage by using the orthotic. This will increase our chances of using a walker, as opposed to a wheelchair being our only option. If it is just a curvature issue that will correct itself, the orthotic won’t hurt her. So, it is either a very serious issue or nothing. Only time will give us an answer, so we made a decision to do something in the wait. If we don’t see improvement from her waist down before October, she will have a spinal MRI at Children’s Mercy.

Diaper Area

Adelaide has a large, yet adorable, backside. {It has been made cuter only by cloth diapers.} Her Wunzi System wraps like a onesie from shoulder to crotch, and I am so glad it accommodates cloth! Adelaide has no strength in her glutes. At all. The only comment I have about the front: Graham reminds me every day that “Adelaide don’t haves a penis. Only I’s gots a penis. I no know what she’s gots, but it NOT a penis. But she poops out one of hers butts. I a boy!” He should write anatomy textbooks.

Legs

Chunky, adorable legs. Adelaide’s legs have no strength in them, but they are on my list of favorite things in the world. She cannot bear weight, and her leg strength {actually, her strength from the waist down} is at a 4 month old range. We are praying for some serious progress in this area. If not, she will have a spinal MRI (and possibly a muscle biopsy) in October. Her legs are thick and short. She is in the 0 percentile for height. The good news: she can feel her legs. She can move her legs. They just need a lot of strength.

Feet

Size 1. Adelaide is still wearing size 1 shoes. The tops of her feet are the thickness of a 2-year-old’s, so it is difficult finding soft-soled shoes that can accommodate such a chunky foot. Adelaide likes to eat shoes. She doesn’t like to wear them. I still try, and she looks gorgeous for the small amount of time she will keep them on. The girl is seriously lacking fine motor skills, but can undo a shoe strap before I can even blink.

 Toes

One word: ADORABLE.

WhewIf you made it this far, you must be a serious Adelaide supporter! Thank you! Or, you may be a parent who was told your baby has hypotonia. Or a mega cisterna magna. Or thinning or missing white matter. Or polymicrogyria. If so, please let us know. We would LOVE to pray for you & support you on this journey.

Also, please share your choice of snack and/or freezer chocolate in the comments. You know you ate something while reading this novel…

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23 thoughts on “Head to Toe {An Adelaide Update aka You Will Need a Snack…}

  1. Danielle says:

    You are amazing – what great information! Thanks for sharing. Your baby girl is beautiful – I love seeing pics of her!

  2. ohAmanda says:

    Praying for you and Adelaide. Sweet sweet girl!

    a

  3. ohAmanda says:

    (oh and I forgot to mention, I really *did* go get a snack: peanut butter and half a dark chocolate bar from Trader Joe’s!)

  4. Ashley says:

    I hopped over from ohamanda’s fb page. I seriously laughed out loud about the nursing story….and Graham’s anatomy lessons.
    Your sweet girl is so cute!!! Praying for your family!!

    And I had a brownie and ice cream an hour ago so I figured my hips wouldn’t appreciate another snack.

  5. Sue Stark says:

    Serious Adelaide supporter that loves your family very much and a handful of whole natural almonds. Thanks so much for the very detailed update and my prayers continue and join all the others! God is so faithful! Love you!

    • Lyndse says:

      Sue, you could have at least covered those almonds in chocolate! Just teasing. Love you so much and appreciate all your support on this journey. Have a blessed weekend!

  6. Abbey says:

    Reading your updates about your adorable little girl make me think about what my parents must have gone through with me. I have a spinal cord injury. I am now just embarking on parenthood myself so I definitely enjoy reading about her. You are always in my prayers!

  7. Laura Smathers says:

    You are amazing. I am praying every day for that beautiful baby girl and for you and your hubby as you embark down this road of unknowns. You son is hysterical and your faith is amazing. Stay strong my friend and know we are here for you and praying!!

    (Oh, and I finished my Talenti Banana Chocolate Swirl Gelato with extra chocolate syrup earlier today during nap time so I wouldn’t have to eat it in a locked bathroom or share it!)

  8. Kathleen says:

    Love how you weave humor throughout your descriptions. You are still an excellent writer. Your kids are so lucky to have you as their momma.

  9. […] Adelaide’s ophthalmology breastfeeding “moment” received some laughs, I will share a story very few people have ever […]

  10. Elise says:

    Oh dear girl. I love your precious family. I do. I didn’t have a snack, but I’m getting ready to eat a banana with cinnamon and a handful of almonds for breakfast. ;) I’m praying for all of you!

  11. […] had just received the newest MRI results and they were worse than we thought they would be. The words ‘missing brain matter’ are […]

  12. Julie says:

    This was extremely informative! Praying for specifics!

  13. jenz3977 says:

    Lyndse… If you’re ever doubting Addie’s ability to astound you, read this post every couple of years. She’s come so far physically and is do much more aware cognitively!

    And I didn’t snack. Found the post too interesting to take a break.
    There WILL be vegemite on toast now that I’m done though :)

  14. Jocelyn Provost says:

    My Nissa has cerebral palsy, mosaic Turner syndrome and a isochromosome x syndrome. She’s 4 years old. She learned to sit independently at 16 months. She learned to roll to sitting at 33 months. She regressed in her playing a little after 2 years of age. She is stuck at that place it seems of 6 month old play. She learned to butt scoot a few months ago which was huge. She has a family doctor and 7 specialists and 5 therapists. She barely uses the right side of her body and her seizures keep her from talking as they damage the part of her brain that runs the tongue. I just want someone to tell me where she is at cognitively so my expectations for her are not too low and too high. I wish someone would tell me what kind of a specialist we need to see to find that out. She is both high and low maintenance. She is a joy.

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