Still Celebrating...

Tonight we celebrated Ryan's birthday with cake and gifts. (Jessica had conflicts on the 29th, so we waited for her to join us.) Deborah and Daddy helped Ryan open his gifts.


Since this was a celebration for Ryan, we had the lights off and used a flashlight to spotlight the neon green wrapping paper. I used a flash in most of the pictures so that you could see what was happening.


The kids went shopping and picked out a gift for Ryan. He's a tough one to buy for. :) But they did a great job with the super sized green and yellow slinky. Ryan seems to really love it.

For the last few kids, I think it started with Johnathon, we have served Ding Dong Towers as their 1st birthday cake. They are the perfect first cake. They make a mess without a HUGE mess. Unfortunately, with Ryan's severe milk protein allergies and inability to eat solid foods, he didn't partake in the cake at all.


The other kids had a tough time accepting Ryan couldn't eat any of his own cake. So, we tried some stage 1 peaches. He wasn't at all interested in them, but I think it helped the other munchkins to feel better.


Happy Birthday, Ryan! We adore you!

*You might notice that Dwight has something covering his finger in the last picture. This is actually an infant toothbrush. However, we use it for "speech therapy." We suspect that Ryan's feeding issues with solids are two fold: 1) he lacks muscle tone and 2) he doesn't like the texture. The little plastic finger piece has a really soft bristled brush on one side and little bumps on the other side. When we first started working on "waking up his mouth muscles", we would stroke his cheeks (outside his mouth) and his chin. Then we progressed to using a washcloth to gently brush his cheeks and chin. Then we started touching just his outside lips with this little infant toothbrush and now we have progressed to gently brushing the inside of his mouth with the toothbrush. When we first started each of those stages, he would pull away. Now he seems to enjoy it.

Brotherly Love

Isn't this the sweetest sight? Brotherly love! (And, no, David isn't sucking his thumb.)

My friends and Ryan's therapists, Dee Dee and Denise, brought this cute little bear to Ryan for his birthday. The bear's tummy slowly changes colors and is so soothing. Ryan ... and all the kids love it! Thank you Dee Dee and Denise! We love you!

Happy Birthday to Ryan!

Can you believe it's been a year? We are so blessed to have Ryan as a part of our family!

Ryan's Occupational Therapist came over today and brought him the sweetest little white bear. When you push on his paw it glows and rotates through several colors. Dee Dee's visit was actually the best part of the day, at least for me. We had the sweetest conversation today. Ryan was a little unhappy about having to work on his birthday. But, we worked with him for a while, and then I let him rest in my arms. When Dee Dee was preparing to leave, I laid him down on his blanket. He obviously wanted to sit up. (He kicks, tightens his tummy and tries to move his body when he wants to sit up.) So, I sat him up. He looked up at Dee Dee ... really looked at her ... and then told her all kinds of things.

I wonder what he was telling her. He was so intent on communicating with her. He smiled several times and really looked at her. It was one of the sweetest moments I have seen with Ryan. It was as if his little spirit just knew exactly what she needed to hear and wanted to tell her all about it.

We love Dee Dee! We love that she has blessed our lives so much during this year. We love that she has helped us to learn so much about Ryan and how to best help him.

But yes the day was about Ryan. We love our Ryan and we're so proud of all the progress he has made. He has many reactive smiles now. He works hard to communicate with us. I wake up each morning to him saying, "Uuuup, uuuuup, uuuuuup." Then I get up, I walk to his crib and tell him that Mommy will right back. He then quietly waits for me to come back. No crying or yelling at me.


However, I actually love to hear him cry. You might remember that Ryan didn't cry at all for the first 10 days of his life. Even now, he seldom ever cries. So, when he does cry, it just makes my heart happy.

Ryan is also doing better with sitting and with his head control. He's still a little bit of a bobble head but it's definitely getting stronger. He also doesn't get mad about tummy time anymore. He can now roll from his back to his tummy, but he can't quite make it back to his back.

He has a couple of favorite toys that he can now hold and can akwardly bring to his mouth ... a rainbow colored koosh ball, a neon green/yellow ring thingy, and a white washcloth. Yes, a washcloth.

He still doesn't visually track objects or look at them in normal light, but in a dark room, he can track his neon green slinky, and a few other objects. He also loves a piece of slinky neon green fabric. His vision therapist calls it his snake fabric. (You can imagine how I feel about that!) I just call it his green slinky fabric.

He loves Deborah's bright pink ball, and Deborah loves all of his toys, especially his piano and his basketball.

Ryan adores Daddy, loves Mommy, snuggles with Jessica, feels saved by Jacob, loves being fed by David, needs rescued from Johnathon, and is friends with Deborah. And, now, Ryan is ONE!

New Job

Today was Dwight's first day on his new job. We are thankful that he was able to find a new job so quickly. We feel very blessed and appreciate all the networking that he was able to do.

I'm thankful for a husband who has mad interviewing skills and outstanding experience. It sure makes the job search a lot easier!

Whewhoo!

I just received Ryan's test results for Alexander's Disease and for Canavan's Disease. Thankfully, both tests were NEGATIVE. Whew!!!!

A Good Day

Today started early with seizures, followed by a 7.45 am appointment that lasted till 10.30. Then just as I was leaving that appointment, Dwight called to say that Walgreens had found 2 locations that had Ryan's new brand name drug in stock. One of those locations was about 1/2 mile from where I was at. Wasn't that convenient? I felt quite blessed.

After picking up the new prescription, I dropped Jacob and Deborah back off at home. Ryan and I headed over to the GI Specialists office to drop off a form they needed to complete the "correct way" so that we could get insurance to cover this insanely expensive formula. (Have I mentioned that it's costing $40/day?) Hopefully, we'll be able to get the right prescription in the right hands and get the insurance to cover at least some of the formula.

After a few nights of less than 5 hours of sleep, I was extremely tired. Thankfully my Dad was available to chat on the phone while I was driving over there. (Thanks, Dad, for keeping me awake, and for a great conversation! I love and appreciate all your counsel and your support!) On my way home, I stopped and bought myself a Lemonade from Chick-fil-a. I love their lemonade! Yum... anyway ... I was so tired that I felt myself kind of weaving a little. Thankfully, I wasn't far from home.

When I got home my sweet husband took over Ryan and made sure the other kids were taken care of so that I could lay down. I remember lying down on the bed at about 2, turning onto my side, and then ... well, nothing until after 5. I seem to recall my sister calling, but I can't remember what she said. (Sorry, Sis, I'll call you tomorrow.) It was nice to get a few good hours of sleep.

Tonight I had a great night. I talked with several friends this evening, and had an especially nice visit with a friend tonight, and felt very uplifted and motivated by the conversation. Perhaps I'll tell you more about that tomorrow night. It's late and tonight I'm going to hope for more than 5 hours of sleep.

Thanks for everyone's love and support!

Neurologist Appointment

We went to visit the Neurologist today as a follow up to yesterday's ER visit. We have decided that it doesn't make sense to do any additional testing yet. He's not confident that we would get enough new informationt justify putting Ryan to sleep to do an MRI, and we know he's having seizures. We don't need an EEG to tell us that they are seizures.

So, for now, we will just treat the seizures with a new cocktail of medicines. We're going to continue on with the Keppra, slowly lowering the dose a bit over the next few weeks. We're going to slowly add a new drug called Lamictal.

When I asked about the potential side effects of Lamictal, the Neurologist said it can sometimes cause insomnia or sedation. A little sedation might not be a bad thing. But, oh, my, please not insomnia.

So, we'll try it. But it will have to wait till Wednesday. We were unable to find any local pharmacies that had the brand name drug in stock, and our Neurologist felt strongly that it needed to be the brand name on this particular drug. Walgreens is going to order it for us. So, we'll start on Wednesday. I'll let you know how it goes.

Another trip to the ER

Ryan's myoclonic seizures have been dramatically increasing all week. When they first started a few months back, we saw maybe one every few days. Then about a month ago, we started seeing them every morning about every 2 minutes for maybe 20 minutes. On Wednesday of this week, he had 31 in just under an hour. On Thursday, he had 43 in 23 minutes. Today ... well, today he had 66 in 22 minutes. (Yes, I documented every single one. Yes, I am that obsessive/compulsive.) Additionally, they used to stop once he was fully awake. In the past few days, they have continued to happen a few times each hour throughout the day.

I called the Neurologist on Wednesday, and his office said he's out of town for 2 weeks. They said if he's having an increase in seizures to either take him to the ER or to the Pediatrician. So, I called my Pediatrician (cause he was no longer having the seizures). He tried to get in touch with the Neurologist, but apparently only the ER could reach him. So he said, they were definitely of concern, and if they continued to increase he'd recommend going to the ER, if for no other reason than to get through to the Neurologist.

So, after today's spike, I took him to the ER. Thankfully, the ER was pretty empty and we were able to get right in. They examined Ryan and found nothing out of his ordinary. So, they called the Neurologist. He asked them to give him a heavy dose of his anti-seizure meds and to send him home with instructions for me to bring him into the office first thing in the morning. Apparently, the Neurologist will be in town tomorrow and will squeeze him in to his schedule.

I really appreciate his willingness to do that. I suspect it will be an exceptionally long day. A scheduled appointment usually takes about 4-6 hours. Tomorrow may be an all day marathon. Maybe I'll take Dwight's cool DVD glasses.... :)

I'll let you know what we learn.

Cool Science Club

David has started attending a really cool science club. Today he went to a Solar Day Camp and learned lots about electricity and solar energy. I stayed for the first couple of hours and found myself wishing that I could stay all day. The teacher, Mr. Bacon, was amazing! He taught.


They talked, watched videos, did some hands-on stuff, and even made their own solar ovens and tin foil dinners.

They also had time to swim. They ate their tin foil dinners and even had time for a game or two of "Ninja."

David had a great time!

Johnathon

I just had to share this cute picture of Johnathon. This is his favorite spot to watch tv. (Note the blanket. Isn't it beautiful?!!! A friend, a lady I helped in the employment workshop made that for me. Too bad I seldom get to use it. )

Surprise!
I looked out my bedroom window today
and saw DAVID mowing the lawn.
Dad - remember how bugged David was
when you told him he had to work for his food? :)

Eye Doctor

I took Ryan to the Ophthalmologist this morning. No change. His eyes are still not focusing and he still ignores stimulus in regular lighting. Dr Cohen recommended we not worry about using the glasses for a while, and continue to do visual therapy. He also would like us to keep him posted on what the Neurologist or other dr's find.

A Rare Treat

Today was a hot and humid day. Triple digits. David, Johnathon, Ryan and I were waiting for Jessica to finish a beauty appointment and I decided to get a rare treat... Gelato! And, even more odd, I said "Yes!" to two scoops. (My kids are looking for pods.)

More Seizures

Tuesday evening, I took Jessica shopping for dress clothes. My dear Jessica does NOT like dress clothes. She feels naked wearing skirts, doesn't like the way anything dressy looks, and thinks "it's stupid to wear dress clothes to anything but church on Sunday." So... as you can imagine shopping for dress clothes with an opinionated 14 year old was not a fun expedition. We spent several hours and came home empty handed. It wouldn't have been too disappointing to have saved the money if she didn't really NEED to have dress clothes by Monday. But with the impending deadline, it was a bit frustrating.

After we were done shopping, I dropped Jessica and Ryan off at home to go run a report for my Visiting Teaching Coordinator assignment at church. I normally give Ryan his medicine at about 8.30 am and 8.30 pm. Well, I was gone at that time and didn't think to remind Dwight to do it. I also didn't think to do it when I got home that evening ... or even to ask if Dwight had remembered to do it.

Well, Wednesday morning Ryan woke up early and he was doing the arm jerk thing about every 10 seconds and he kept doing it for about 2 hours. I gave him his medicine, and tried to feed him a bottle, but he threw up all the food and the medicine. I suspect he probably had another seizure that involved his little eyes bouncing, but the lights were off (cause it was early, early in the morning) and so I didn't see it. He doesn't normally throw up though unless he's seizing. If he throws up once during the day, he typically throws up several times that day.

I called the Neurologist and after he received the message of what had happened he asked me to bring him to the office. So we did. The Neurologist said he's having Myoclonic Seizures ... that's the arm jerking thing ... and it's not a good thing. We still don't know why. I asked about a couple of syndromes that I had read about online. He said neither one of them fit for Ryan. The primary issue with both syndromes is the seizure. Then he said, "For Ryan, these seizures are just one of a mountain of problems." I can't even describe to you what I felt/feel about that statement. It's true. I know it's true. It was just hard to hear.

So for the next month we're going to try increasing his Keppra every evening from 3 ml to 4 ml. Then we'll report back in a month.

This morning the myoclonic seizures continued but only about 3-4 times each minute. So perhaps we're seeing a little bit of an improvement.

PS In case I haven't said this before the myoclonic seizures primarily happen in the sleep to wake or wake to sleep transitions. Once he's really awake, they only seem to occur maybe once every 2-4 hours.

Another Milestone!

Ryan has achieved another milestone! Today he held his own bottle for a couple of minutes. We are so proud of him!


In case you don't know, let me explain why it's so exciting for an 11 month old baby to hold his own bottle.... Ryan has hypotonia, which basically means he's super floppy. He has been using his legs to kick and to move his body from his back to his side, but he generally doesn't use his arms at all. In the past month, he has started using his hands more, but it's very awkward and difficult.

If you know Dwight, you know how persistent (read stubborn) he can be. Dwight has been giving Ryan his bottles a lot lately. When he does it, he's been helping him hold his hands on the bottle. I, of course, quickly realized that this was a great idea and followed his lead. Typically, as soon as I would remove my hands, his arm would flop back to his side. But not today!


Today he actually kept the pressure on his hands and maintained for probably 2 full minutes. We're so proud of him!!!

Johnathon got new glasses!

These aren't his new glasses, but aren't they awesome?
Johnathon, in typical Johnathon fashion,
had a GREAT time at the Optometrist's office!
He explored everything and tried on every pair of kid-size glasses in the shop,
laughing and smiling the whole time.
It really brightened everyone's day to watch such a happy child.

We're home

The surgery went well. I'm going to be sensitive to Ryan's future privacy and not post all the details of the surgery here, but suffice it to say that things went well. Ryan had a tough time waking up after the surgery, and required some extra breathing assistance to keep his oxygen saturation levels above 92. But eventually he figured it out and woke up. I'll add a picture or two later.

He's napping right now and I think I'll do the same thing. Thanks again for all the love and prayers!

Surgery in the morning...

I just thought I'd let you all know that we decided to go forward with the bi-orchioplexy and hernia repair in the morning. We had originally thought to have a different surgeon do it, but since Dwight was laid off and we may be changing insurance we decided to go ahead and do it tomorrow.

The surgery is an out-patient surgery. They will make two small incisions, one on each side of the genitals. We are hoping to find both testes are normally developed and that they just never descended. When they do find them, hopefully, they will simply need to be pulled down into the scrotum. There is a chance of them being "tethered", which will mean a little more work. Let's just pray that's not the case.

Once they have both testes in the scrotum, they will put a stitch through each one and pull the thread outside the scrotum and attach it to a button. Yes, a button ... just like what you find on shirts ... except it will be a medical grade, extremely clean button (at least to start). Then they will repair the hernia that is usually there with undescended testicals.

The button will stay on until everything has healed and then it will be removed.

If I don't make it back on tomorrow to give you an update it means that we have spent the night at the hospital. While it is an outpatient surgery, Ryan has become very non-responsive to small things that other children handle without any problem. Therefore, the surgeon recommended that we plan to spend the night. If there's any doubt as to how medically stable he is, we will spend the night. I appreciate that they are not intending to rush us out the door.

So, we do expect everything to go very smoothly, but please remember us in your prayers, and even more importantly please remember the Surgeon and his staff in your prayers. We love and appreciate you all and count each of you -- even you blog stalkers :) -- as one of our blessings.

More tests and more good news...

We have now made it for 4 days without any additional vomiting. Whewhoo!

We had a modified barium swallow test with a speech pathologist today. The Speech Pathologist simply prepared various textures of food to give to Ryan and watched the way he swallows on x-ray. The concern was that Ryan might be aspirating food (swallowing it into his airway instead of his tummy).

They started with a thin liquid similar to water or formula. Then moved to a thicker liquid, think nectar. And, then finally to stage 3 applesauce.

The good news is that Ryan did not aspirate any of the food. However, he has a tendency for "deep penetration," which basically means he swallows and holds the food over the airway before finishing the swallow. The really good news is that he doesn't do the deep penetration thing when drinking cold items.

Will finish in a minute...

Okay, so I forgot to come back and finish ... worse yet ... I don't remember what else I was going to tell you. It must not have been that important, right?