An Update on Ryan

This week brought both good and not-so-good news. Let's start with the not-so-good so that we can end on a happy note.

Ryan had his first appointment with the Pediatric ENT Specialist (Ear, Nose & Throat). They visually examined Ryan. During the appointment, the dr was attempting to use a tongue depressor to take a look in Ryan's mouth. However, Ryan wasn't opening his mouth. The dr said, "Come on little guy I need you to cry so I can see in your mouth." But you all know Ryan doesn't cry much. Instead Ryan opened his mouth and said, "Ahhh..." It was really sweet! I don't think I could have trained a baby to respond more on cue than that. However, Ryan wasn't as cooperative or patient when they put the little scope up his nose. He didn't like the numbing drops and really didn't like us holding his hands and head in place. It's the pits to watch things like that. Anyway ... so the diagnosis... mild septal deviation, mild adenoid hypertrophy, and submucous cleft palate. The bony structure looks fine.

The nasal septum is the part of the nose that separates the 2 airways and the nostrils. The septal deviation esentially means that his left side is smaller than his right. We're not sure how much so. He has been placed on steroids to help alleviate some of the swelling in hopes of getting a better view of things next time. We don't think this will cause problems. We think it just contributes to snoring, snorting and other noises he makes, especially at night.

The mild adenoid hypertrophy means that the adenoids are slightly enlarged, even more than he'd anticipate for an infant.
At this point, we cannot do an adenoidectomy due to the submucous cleft palate. It would make it even harder for Ryan to close off the back of his throat. Therefore, for now, we will continue to watch, and sometime in the future we may consider doing a partial adenoidectomy.

The submucous cleft palate is not quite what I think of when I hear cleft palate. There is no hole for Ryan. Ryan's cleft only involves the soft tissue in the back of his mouth (the soft palate) and does not extend to the front of his mouth in the hard palate area). Ryan's is considered an "isolated cleft" because it only affects the palate and not the lip. The muscles of the palate did not fully close. This makes it tough to close off the back of his throat. This explains why when Ryan vomits, he comes mostly out his nose. Once in a while this can affect future speech; however, the dr has not seen this frequently when the cleft palate has been like Ryan's. More often though the child with this condition has frequent ear infections.

Since Ryan doesn't seem to communicate pain clearly, the dr has asked that Ryan's ears be checked at least once a month. Since we see a medical specialst or his pediatrician at least ever 2 weeks, we figure this shouldn't be hard to accomplish. We'll do this until we figure out how Ryan communicates pain. Hopefully, we won't have any more ruptured ear drums.

So ... the good news! It's always much more fun to share the good news! On Wednesday, I took Ryan to see his Ophthalmologist. Let me first tell you a little about this dr. He reminds me of someone from New York. Perhaps a Jewish man from New York, well-educated, and accustomed to afluence. In the times we have been in his office, I have heard a couple of patients be very vocal about how much they did not like him. He's very straight forward, quick, and ... well, not very warm. However, my goal is to always express appreciation ... no matter what the news ... and to be more than just a good patient. I want to make their day better than it was before they saw me. Don't we all prefer to deal with cheerful and grateful people?

On our 1st visit, the dr lacked any warmth when delivering the suspected diagnosis of possible blindness. On our 2nd visit, the dr was running really late ... like more than an hour. The patient before us was obviously extremely bugged. When we went in for our turn, he apologized. I thanked him and said I had actually enjoyed the extra time to read and relax. He looked at me in surprise and then thanked me for being so understanding. He had been delayed by a surgery that had some unexpected events. I could feel his sense of relief when I wasn't yet another angry patient.

So this last visit, he very efficiently went about his exam, and then looked at me and said, "Well, Mrs Mann, I think Ryan is starting to see." Perhaps you can imagine the absolute joy that surged through my body. I think for a moment he even shared my joy. He told me that whatever we are doing in therapy seems to be working and to keep up the good work.

Once again, this week has been busy with therapists and specialists. And, once again, I feel great appreciation for those who have helped us. I know that all of them have made sacrificies to learn all that they know. I know they all do their very best to help others. I am so thankful for each of them.

I'm also really thankful for the progress we see daily in Ryan. Today when I was doing vision therapy with him, he was lifting his head up to look up. I'm so proud of Ryan and how hard he works. I just love this little guy!

Saturday with Daddy

Dwight took Jessica to Art school today. Since it is downtown, he usually stays downtown and hangs out while waiting. Today he took Deborah and Johnathon with him so that I could get some other things done. (Thanks again, Dwight!)

When he asked Deborah what she wanted to do, her first suggestion was to go to the dentist office. Yes, we have an awesome dentist and everyone there loves Deborah. When he said they couldn't she then wanted to "go on an eb-or". Since Dwight didn't know what she was referring to he started asking her questions. "What do you do on an eb-or?" She said, "You push buttons!" Still not quite sure, Dwight asked, "What happens when you push the buttons?" She excitedly replied, "You go up!"

So, guess what Dwight, Johnathon and Deborah did today? Yes, they went to the downtown mall and rode an elevator up and down and up and down and up and down and up and down ...

I'm told a good time was had by all. Pretty cool Dad, right?

Today Ryan and I attended a celebration for NICU Graduates at North Central Baptist Hospital. It was a good opportunity to remember how blessed we are to have Ryan with us. We also saw a couple of the amazing nurses. I wish we had been able to see more of them. Some of our favorites were not there. I was looking forward to the opportunity to tell them again just how much they helped us.
We got this sugar cookie covered in a hard sugar icing. I must do my duty ... and eat it. :) This is my favorite type of cookie. Remember Roselyn Bakeries? They had the best sugar cookies!

Off to the Zoo

Today Deborah, Jessica, Ryan and I went to the zoo. We had a fantastic time! It was the perfect weather here in San Antonio ... mid 70's with a slight breeze. Just a beautiful day!


Deborah didn't have a lot of interest in some of the animals. Not the lions, tigers or bears. (Oh, my! Oh, sorry. I couldn't resist.) Not the butterflies or the jaguars or the flamingos. But, the monkeys ... she really liked the monkeys.

Jessica said, "A fish eating sushi!"

Not my favorite exhibit, but it was kind of fascinating to watch this huge python rub its skin off. Fascinating and creepy. (To my family ... did you ever think there would be a time when I'd have a picture of a snake on my blog? Hard to believe, huh?)


This was Deborah's favorite thing at the zoo. Not the fish. No, she wanted to see the crocodiles. We went back to this place several times!

The Week in Review

This week has been a fairly easy week. Unfortunately, Ryan developed an ear infection and bronchitis so we have been home bound since yesterday. It's actually been quite nice. The boys and I have played games together. Jessica and I worked on one of her assignments for her BYU English class, and Deborah and I have worked on potty training her this week.

On Monday, Ryan's therapist brought a little piano for us to try with Ryan. The hope is that he will enjoy hearing the music when he touches the keys and that will motivate him to touch the keys more. Well, Deborah loves the piano and so everytime she gets a chance she "helps" Ryan to touch the piano.


You can also see from the picture that we've had to start padding the chair. Ryan is starting to lift his head up a little on his own. (YEAH!) When he does that in his corner chair, it obviously doesn't feel good. So we just throw a little blanket over the top part to provide a little cushion.

You can also see in the picture that we are now wedging a little pillow between his tummy and his desk. This helps to keep his hands up on the table instead of pinned down by his side. He has a really tendency to keep his left arm straight down to his side, almost behind him.

The boys are starting their soccer season in 2 weeks. They are super excited about it. Dwight will be the assistant coach for Johnathon's team. This is Johnathon's first year playing soccer. It should be lots of fun!

This is a picture of David sporting a faux-hawk (and looking a little crazy). He was quite pleased with himself. Silly boy.


And, finally, I wanted to share one more success. Ryan is now starting to grasp toys ... okay well 2 specific toys ... his koosh ball & his rings. (Thanks again, Lucy, for the koosh ball!) Isn't that great! A couple of times this week, he has even grasped the toy with his left hand, brought it to the center of the body, touched it with his right hand, and then brought it to his mouth. Yeah, Ryan! He is working so hard and we are so proud of him!

Miracles

We had an appointment with the pediatric cardiologist today. In case you don't know or remember, while in the NICU Ryan was diagnosed with 2 heart defects: a hole between 2 chambers of the heart and a kinked aorta. At our last appointment, we learned that the hole was almost completely closed and that we were waiting for the right time to do surgery on the aorta.

The Dr spent about 45 minutes looking at his heart using an ultrasound. Then he showed me the kinked aorta pictures from our last appointment and showed me that there was NO KINK at all today. It really is a miracle and we are very, very blessed! Ryan was discharged from the care of the pediatric cardiologist and given a clean bill of health on his heart.

It was so nice to hear good news from a dr and to see, again, the tender mercies of the Lord in our lives. Thank you for your prayers, love, and support!

Master of Avoidance

Today we had the Occupational and Developmental Therapists over to play with Ryan. You can see all the therapy stuff all over the room. After doing some work, Ryan closed his eyes and shut us out. If you look close, you can see that his little eyes are just slightly open. Little stinker.

Happy St Patrick's Day!

Today the kids and I made these cute little cakepops.
We had so much fun making them and really enjoyed sharing them with our friends.


Happy St Patricks Day!

Update on Baby Ryan

Ryan and I visited with his Neurologist today. We discussed concerns about the increasing amount of irritability that Ryan has been displaying over the past several days, 2 events that occurred during this past month that may have been seizures, and Ryan's constant congestion. The Neurologist felt that the constant congestion could affect Ryan's ability to get quality sleep. A lack of quality sleep could contribute to additional seizures. He would like us to see a Pediatric Ear Nose & Throat (ENT) Specialist to rule out any structural issues. He would also like us to discuss with Ryan's Pediatrician the possibility that the solid food we just started about 9 days ago could be contributing to the irritability.

So, why not just blame the grumpiness on typical baby stuff? Well, the medicine Ryan takes to prevent seizures is known to cause irritability. If the medicine is the source of the irritability then Vitamin B-6 should resolve it. (Wouldn't it be nice if a good dose of Vitamin B-6 would resolve everyone's irritability? :)) If however it doesn't resolve and there's no other known cause for it, then the Neurologist feels the only decision would be to take Ryan off the medicine and look for another answer.

We also discussed Ryan's muscular structure. He is definitely improving in his muscle control. He can almost hold his head up now without looking like a bobble head. Not for long, but he can do it.

Ryan's leg reflexes seem to be better than they used to be. However, the Neurologist was concerned about the way he continues to position his legs with his feet resting on each other. He also does this with his hands. You might notice that he frequently holds his hands together over his chest.

I feel very thankful for this Dr. He is super bright and very compassionate. I appreciate my neurosurgeon friend referring me to him.

Jessica's Latest Creation

Jessica's Drawing

Jessica sketched this in February while watching 2 of the universe's calmest little boys. They were fascinated by her drawings.

Tonight Ryan sat in the corner chair. He wasn't overly interested in the piano, but he tolerated sitting there really well. I know it's a lot of work for him.

We also did some pushing exercises to strengthen his legs. I thought you might enjoy checking out the video. Yes, I have a cold right now, and no, I don't have an amazing singing voice. But, you're welcome to turn off your volume if I scare you. hahaha... hopefully it's not that bad.

Rice Cereal

The doctor gave us the go ahead this week to start introducing food to Ryan. We need to take it extra slow following the normal precautions about food allergies, and we also need to watch for any signs of choking or digestion issues. So, tonight Ryan tried rice cereal for the first time ... just plain rice cereal. He really enjoyed eating it! Imagine what he's going to think about peaches!

Jacob's First Court of Honor

Jacob had his first Court of Honor tonight. He has worked hard over the past few months. He earned his Tenderfoot, 1st Class and 2nd Class ranks. He also received his first aid, fingerprinting, swimming, motor boating merit badges. We're very proud of him!

Cool New Therapy Tools

Today Ryan's Occupational Therapist and Developmental Therapists brought by some new therapeutic "toys." These chairs are called "corner chairs." They are designed to help children strengthen the muscles required to sit. The cushioned pad in the middle of the seat on the one below is especially helpful for little ones who keep their legs pinned together. (Ryan doesn't do this. He is exactly opposite. His legs fall open at the hips in this shape <> instead of like this ||.) This first chair is professionally made and costs more than $400.

This is also a corner chair, but it's a homemade corner chair. It will basically serve the same purpose. The chair forces the little ones arms in a forward direction. This is really helpful with Ryan. He tends to keep his arms, especially his right arm, pinned behind him. By forcing the arms forward it helps to stabilize the body, which will hopefully strengthen Ryan's core muscles so that eventually he can sit on his own.

They also brought this table, for Ryan not Deborah but she sure loves it! The table is the perfect little size to slide right up next to the child when they are seated in a corner chair. With the table in front of the child, they can rest their arms on the table. These next 2 pictures are of toys the therapists use with older children. The reason they brought them was to show some of the "hand made" toys that can be donated to the therapists. They are pretty simple in design, and are very plain. They just require cuts, extra good sanding, and a plain stain or sealer. Everything has to be child safe. We wouldn't want to give a child lead poisoning. So, do you know any future Eagle Scouts who are looking for a meaningful project? Or, anyone who enjoys cutting wood? The kids and I would be happy to do the sanding and staining. I'd be happy to cut the wood if I just knew how. But, I do think these projects would be great for a Scout looking for an Eagle project.

Something to think about...

I'm preparing a talk for Stake Conference and I ran across this scripture ... isn't it great?

"And as Jesus passed by, he saw a man which was blind from his birth.
"And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?
"Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."

John 9:1-3

A Good Day

Like all of us, Ryan has good days and ... well, not so good days. On his not so good days, he can barely hold his head up, his arms and legs go from being really floppy to really stiff, his arms seem to move randomly, and he throws up everything he eats. On his good days, he can lift his head and only has a little bobbling, his legs push against things, he babbles and sings with us, and he just generally seems interested in his environment.

Thursday was a good day. His vision intervention (VI) therapist came over. He was asleep when she got here, but we woke him up and he did some good work for us. (This is especially significant because recently he has been "sleeping" to avoid therapy. Did you know a baby can truly play possum? Ryan is great at it. Last week his Developmental and Occupational Therapists came over. He went to "sleep" and woke up while I was standing at the door saying good bye. Smart boy.)

Anyway ... I have now set up my closet as our black box. The downstairs half bath just gets a little too warm with 2 or 3 adults and a baby and all the equipment. Thankfully it is a large walk in closet ... or think really small bedroom.

We turn off the lights so that it is completely dark except for the spotlight. We put a spotlight on a single bright object. Babies with CVI, like Ryan, tend to show a preference for a specific color. We thought Ryan's was neon pink, but not anymore. The preference of the day was neon green.


We first showed him this green ball with the light shining up through it. He really liked it! He grabbed it with his left hand and held on to it while we moved it to the right. He doesn't track objects smoothly like most of us do, but he did very akwardly "follow" the object.

We then tried the neon pink slinky, but he would have none of that. So, we moved onto the neon green slinky with the light shiny down through it. He didn't respond until it started moving. He seemed to watch it a lot, but wasn't as responsive with his hands to the slinky today.


After adequate time with the slinky, we tried a spinwheel. (Remember those?) The first one we used was orange and silver. He didn't respond at all to it. Not even when it was moving. So, then we used the silver and red. He eventually responded to it, but not as well as to other objects. He would look at it and then bat at it with his hands.


I was surprised at how long he was willing to work today. It is a lot of work to learn new skills. We take so many things for granted in early childhood development. But children's "play" is really a lot of work. No wonder they need so much more sleep.

I'm thankful for the good days!

Cute Little Munchkin

Jessica braided Deborah's hair today. Isn't she SOOO cute!?!

Jessica celebrated her birthday tonight with many of her Beehive friends. They watched "The Return to Zarahemla", had sodas, ate popcorn, pizza rolls, and cheese sticks. But mostly they just hung out, playing games and giggling. Great girls!


She wanted a Sushi cake and since she's a realist she knew I would not be the one to make it for her. :) So, she made it herself. It was her first time playing with fondant. I think she did a great job!

Baby Ryan's New Chair

One of our amazing therapists recommended a Bumbo chair for Ryan to help strengthen his core muscles and to allow us to work on his grasp. I was skeptical but we bought one. He only tolerates the chair for a minute or two, but he looks SOOO cute, doesn't he?


Ryan gets tired pretty easily when holding up his head. So, in the next picture you'll see Daddy gently helping to support the weight of his head.