Such A Puzzle

We are settled into our "home away from home" on the 6th floor, where we have reunited with so many of our nursing friends. We have to be the biggest fans of UNC Children's Floor 6...such good people here, we wish we could introduce you to these incredible human beings. Today we are working on Oliver’s constipation (i.e. he is getting another clean out) as well as meeting with dozens of doctors. We have actually gotten tired of talking, especially retelling Ollie’s story “from the beginning.” We are tinkering around with some medications and trying to figure out a plan of action for the fainting spells, but so far nobody has a brilliant solution. We wish there was more we could tell you, but as the neurologist said, “Oliver, you are such a puzzle!”

Mama stealing kisses 

Y'all are so sweet...we can already anticipate the texts and FB messages you are going to send:

Is this related to his Mitochondrial Disease? Probably. Do we know more about the genetic test results? Not yet. Does this have anything to do with Epilepsy? Probably not. Is this a self-stimulating behavior related to Autism or Sensory Processing Disorder? Maybe. Is this seen in other kids with Tuberous Sclerosis? No. Do you know why he is doing this? Not exactly. Is he feeling discomfort or stress and trying to soothe himself? Probably.

Do you need anything at all?!? Actually we could use a box of nice tissues with the aloe. The hospital ones are sandpaper and sometimes we do cry. This is hard on our hearts. We would also like a continuous IV drip of coffee. 😂

How long will you be there? We don’t know, but probably at least until Monday.

One of the few smiles from today. We worked hard for this one!

Per usual, we have more questions than answers. We are getting more comfortable living in the land of unknowns. It is an emotionally draining place to be, with questions about life expectancy and quality of life always swirling in the background.

Reading books with his cousin, Jackson, who took a break from classes to pop in for a visit

No matter the answers we do or do not get, we are going to live life the way we’ve been living it---with intention and gratitude.

Thoughts on Discipline

Recently, I have been pondering our discipline strategies with Oliver. Suffice it to say that, in my opinion, we mostly crash and burn. It seems that every time we are making real progress we are back in the hospital or the seizures get worse. If consistency is the key to great parenting- we fail often. We simply can't control all the external factors. This little paragraph I found on the internet captures where we are these days.

“Disciplining a child who is "differently-abled" is likely to bring out the best and the worst in a parent. Parents try to help a child make up for what's missing by increasing their love and attention, yet children with special needs trigger special frustrations in parents. Be prepared to run out of patience...Our son, Stephen, has Down Syndrome. Our most difficult adjustment in discipline was learning to cope with development in slow motion. Most children go through predictable stages of development. You know about when to expect what behavior and how long it will last. You know that two-year-old temper tantrums will diminish once the child learns to speak. Knowing you don't have to weather this undesirable behavior indefinitely helps you cope. With the developmentally-disabled child, stages seem to go on forever, as do the frustrations in child and parents. For example, it may take this child a year to accomplish three month's worth of "normal" speech development. Parenting a special needs child is a tough job. The ups and downs and joys and sorrows are magnified: You rejoice at each accomplishment, you worry about each new challenge.”

Click here to read the whole article

The tent is working for the most part. Whoo-Hoo! Oliver is sleeping fairly well and the dancing elephants are gone (THANK GOD, couldn't have taken that much longer). I think being in the tent helps him go back to sleep if he wakes up in the middle of the night due to a seizure whatever. He is still awake more than we'd like but, it is an improvement. Sleep issues are very common with TSC so I think we also have to adjust our expectations a bit.

Good news about the seizure count! His seizures have decreased from 10 on Thursday to 2 today. We are thankful. Hopefully, the increase in the med and/or the diet will kick in and the seizures will stop completely.

I am still working very hard on the diet. It is still eating up a crazy amount of time. I met another mom (Karen) in Wilmington who has a kid on the keto diet. Now I've met the only 2 moms (that I know of) in town who are doing this diet. Anyway her son is 5 and she is a nurse. She had some great recipes and tips. Since they started when her son was a toddler she has some good ideas for that age group. She also said it took 2 months for it to really work. That was encouraging for me to hear because I am anxious for results. The hard part is she told me they haven't been out to eat in 2 1/2 years (since starting the diet) and family meals aren't realistic for them. I think I underestimated how many areas of our life this would bleed into. There are just so many good things we have to say "no" to. That is hard. I am hoping, over time, we can learn how to make family dinners work. It is MUCH harder than it might seem to be eating 2 different meals at the same time, all prepared by the same person, without a terrible tantrum.

Please keep praying for us as the marathon continues.

The Ding Dang Tent ARRIVED!!!

Yes, you read right, that much anticipated tent is HERE! I included some pics for your amusement. Today we let Oliver play in there and check it out. We realized we have a really thick mattress so there isn't too much head room. We'll let you know how the night goes...we have no idea what to expect.

As for those 1o seizures, the dr. has said Oliver needs to go back on Keppra. The team in Boston was really concerned about him having so many seizures in one day. They think even though the dose (of Keppra) was small it was working. There doesn't seem to be any other reasonable explanation for such a spike in seizure activity. So, we are back on the Keppra. Not a big deal really and a simple enough fix (if that is really what triggered it).

After searching throughout the town, we finally found an acceptable protein powder. I think today, for the first time ever, we might have had him "in balance" all day. I haven't run the #s yet so I am not totally sure). Once he is "in balance" for at least a week or so we'll have a better idea of whether the diet is working.

Wanted to share this because it makes me smile...Recently Oliver has starting saying "Go Dog Go!" which is the name of his favorite book. It just sounds so cute when he yells it out with such enthusiasm. We are really thrilled with his progress in speech and language development. Despite all the ups and downs he is still doing SO WELL. We don't want to miss any opportunity to thank the Lord and rejoice!