Another little scholar

Ryan's new glasses arrived today. Cute, right?

Ryan's MRI

Ryan had his first MRI this morning. Our day started VERY early. Ryan wasn't supposed to nurse after 6 am. I had set my alarm for 5.30 am thinking that I could nurse him just before 6. But, Ryan apparently had other plans. He woke up at 5 am. I took my time changing his diaper in hopes of delaying his feeding, but he was finished nursing by 5.30 am and wouldn't nurse any more after that.

We left the house around 6.45 am and arrived at the hospital at about 8 am. We went downstairs to the pediatric radiology waiting room to register. After about 5 minutes, we were taken to the prep/recovery area. They weighed him (14 lbs) and took a medical history. I met with the anesthesiologist who decided that we would just try an IV sedation.

It took 5 ... yes, you read that correctly ... FIVE attempts and 1 1/2 hours to get the IV placed. It was heart-wrenching to watch as they pinned down his legs and arms, and pushed and twisted his little limbs in a desperate attempt to find his tiny veins. When they finally had the IV placed, he went straight to sleep before they even started the meds. The little guy was just exhausted from all the trauma.

They took him back to the MRI and of course I wasn't allowed to go with him. They said he'd be back in 30-45 minutes, but it was 65 minutes before he came back. He apparently slept through the MRI, but woke as they took him out of the MRI. He cried all the way back to the room, and as soon as picked him up he went right back to sleep.

We spent quite a while in the recovery room trying to get him to wake up enough to take some clear liquids. They couldn't discharge him until he had kept some of the clear liquid down for a while. We eventually got him to drink enough of the glucose water and to keep it down, so we were discharged.

We got home around 2.30 pm. He and I slept for about an hour. I was hoping for a little more sleep, but I'm glad to see that the sedative seems to have worn off completely. I'm thankful that the ladies were eventually able to get the IV placed and Ryan was able to have the MRI done.

Now we wait ... about 62 more hours ...

Fun flash back

I was showing Deborah pictures of her today as a baby. When I saw this one it made me smile. And, Deborah was so impressed with herself. "Me read book!" Deborah was 6 months old when this picture was taken.

EEG, Geneticist Appt, and a Sweater

We started this morning bright and early with an EEG. Ryan was a real champ! He slept through the whole thing and gave them a perfect reading on the first attempt. We will find out the results next Monday when we meet with the Neurologist again.

This afternoon we had an appointment with the legendary Geneticist. He's great and we really appreciated him. He was reviewed the results of the Chromosome Microarray with us ... normal, no problems diagnosed. After an extensive history and thorough exam, he feels that the next step is to see what the MRI reveals to us. He's going to personally view the MRI on Monday and will give us a call Monday afternoon.

So, Friday is Ryan's next appointment. Hopefully, he'll sleep through the MRI also and we'll be able to avoid having to sedate him.

And, on brighter notes... I finished his little sweater ... Just in the nick of time, too. I'm pleased with the results. It's a very handsome little sweater. I also ordered 2 new knitting books by Debbie Bliss, one of which has patterns for 3-10 year olds. I saw a cute little boy sweater in it and think I might make it for Johnathon for next winter. Speaking of knitting... I think I'll go do some now...

Oh, but first, one more picture ... Jessica took this picture of Ryan and I sitting on the couch tonight. I know ... I look exhausted (becaused I am tonight), but look at Ryan. Doesn't he look like such a big boy?

Neurologist Appointment

My Notes: Possibly cortical dysplasia? Especially interested in viewing the midline brain structure and the lower brain structure, specifically below the thalamus. Could be minor hydrocephalus... slight possibility. Ryan orients to the light. The light is getting in. Dr Seals does not think it's true amblyopia but probably perceptive amblyopia.

The pet. hem/calcifications identified on the CT Scan & Ultrasound in the NICU are definitely "artifact".

Diagnosis: Encephalopathy

The Neurologist Appointment

I met the Neurologist today. This Neurologist came highly recommended and I liked him a lot. He was very kind, but obviously incredibly talented/knowledgeable. I took him a well-organized set of all of Ryan's medical records. (He has a lot for a 5 month old baby.) It was super helpful to have the records and especially helpful that I was so familiar with them.

He spent a lot of time, probably an hour, going through Ryan's health history and asking me questions. Then he spent another 1/2 hour or so examining Ryan. He ordered an EEG for tomorrow and an MRI of Ryan's brain for Friday. He would have liked to have done the MRI earlier; however, it takes 2-3 days to get the approval from our insurance company. He didn't want to spend a lot of time talking about the possible diagnosis until we have the test results back.

So, it was pretty much what we anticipated ... he ordered more tests. We have EEG on Tuesday, and the MRI on Friday. Then we see the Neurologist again on Monday.

I am thankful for a friend who is a Neurosurgeon, and for his recommendation in finding this Pediatric Neurologist. I am thankful to have immediate confidence in his knowledge. I am thankful that there are so many wonderful men and women who are willing to sacrifice so much to attend medical schools. They are such a blessing in our lives. I am especially thankful that the men and women who have assisted us with Ryan's health concerns have been so kind and good to us. It sure makes our lives much easier.

Tomorrow's the Day

I was visiting a website I had bookmarked a while ago, and came across the following statement. I can't imagine being able to pen what I'm feeling better than this. Tonight I don't want to go to sleep because I suspect the morning is going to be hard. But, anyway, here's what it says:

I remember the pain of the unknown, I still have it. How does someone overcome it - or do we just learn to accept it? These feelings are still fresh, but the sting isn't as painful. There is hope, and things do get better. If you are just starting this journey - remember that! You will find a way to survive and make it through. Your child is still the little child that will always lay their head on your shoulder and look into your eyes and give you that awesome feeling. They didn't ask for any of this, but it is our job as their parents to help them through it. You will still have your dreams; they will just need to be adjusted. You'll wake up from the nightmare and you will just dream new, more fulfilling dreams.

You are not alone.

(Thanks to: http://djmsprangerwelcome.blogspot.com/)

Tomorrow's the Day

Tomorrow morning we have our appointment with the Neurologist. I suspect he will just order tests, but I am anxious. It's going to be an even busier week this week than last.

Emails

We've all received them. The email that guilts us into forwarding it to 2,000 of our closest friends ... or else. Tonight I got what I thought was one of those emails. It was a story about a kind act performed by a San Antonio man to save a bunch of new baby ducks. Imagine my surprise when I got to the end of the email and there was no guilt trip. It simply ended with:

Live simply.
Love generously.
Care deeply.
Speak kindly.

Leave the rest to God.

Ryan rolled over today!

He's been working on this new skill a lot since about Tuesday. After telling Jessica of his intent, she started helping him by moving his arm out of the way. So today when the new developmental therapist, Denise came over, I laid him down on his blanket, and he immediately showed off what he could do! He rolled right on over ... all the way. And, again tonight he made it all the way over. We're very proud of Ryan!Oh, and in case you didn't notice from the picture... Although he's really determined to roll over, he still really dislikes being on his tummy!

And, yes, I really liked Denise. She was great!

Ryan rolled over!

He's been working on this new skill a lot since about Tuesday. After telling Jessica of his intent, she started helping him by moving his arm out of the way. So today when the new developmental therapist, Denise came over, I laid him down on his blanket, and he immediately showed off what he could do! He rolled right on over ... all the way. And, again tonight he made it all the way over. We're very proud of Ryan!Oh, and in case you didn't notice from the picture... Although he's really determined to roll over, he still really dislikes being on his tummy!

And, yes, I really liked Denise. She was great!

Ophthalmologist Appointment

Ryan had his first appointment with the Ophthamologist this morning. Dr Cohen diagnosed him with strabismus and exotropia. They prescribed glasses for him to wear to prevent amblyopia. Dr Cohen is not sure if Ryan has vision and would like him to see a Neurologist.

We ordered the glasses from Vision Source since Dr Cohen's glass wear center does not accept our vision insurance. They should be received in 7-10 days.

No surgery... Whew!

I went to see the hand surgeon today. After x-rays and a CT scan, she determined that she "thinks" I have tendonitis. So, she shot my wrist full of lidocaine and prednisone. I'm stuck in the blasted brace for another 6 weeks, as the bone graft has not healed completely. She also thinks she should have left me in the brace for a full 12 weeks instead of the 2 weeks that she did. (Big difference, right? 12 weeks versus 2??) Anyway ... it is what it is now. So, now I get to wear the brace for another 6 weeks. No physical therapy, and oh, she also added: "You'll lose a lot of your mobility, but you knew that already, right?" Um... no. But, as long as I can still knit when this is all said and done, I suppose it'll be fine. Who cares that I have the goofiest looking wave on earth now.

Groundhogs Day

Okay, do you love the background? It's kind of obnoxious, right? But here's the scoop... have you ever known ANYONE who actually celebrated Groundhogs Day ... outside of Pennsylvania ... or looked forward to it? I do. My sweetheart. Yes, he really likes Groundhogs day. I think it has to do with serving his mission in Pennsylvania. So, in honor of him I have a Groundhogs day background. Perhaps this year, I'll surprise him and celebrate the day. (Do you read this, Dwight?)

In other news ... I meet with the surgeon again tomorrow. It'll be interesting to hear what she thinks about this blasted wrist bone of mine. I don't have time for another surgery, but I need to do something to get rid of pain. You should hear the popping noise it makes now EVERY time I move my wrist. Weird, right?

On Tuesday we start co-op again with our old group. I will miss the boys we did it with last semester. They were great kids and lots of fun! I just need the women from the old group. I know this is not the best option for Jacob. He was really thriving in the situation last semester. I hope though that it will work okay for him too.

On Wednesday, we have an appointment for Ryan to see the Ophthamologist. How will they tell if he can see or not? I haven't taught him the alphabet yet? Should be interesting...

Then Thursday & Friday, are filled with the usual plus appointments with the occupational therapist, a developmental therapist, and an evaluation by a physical therapist. Busy, busy...

Pediatric Ophthamologist

I was unable to get an appointment with Dr Rhame's first recommendation, Dr McCash, as they do not accept our insurance. Dr McCash's office also gave me the names of:

Dr. Shatz (210.704.4100) located downtown
Dr. Cohen(210.697.2020) located in Stone Oak

Dr Rhame had also given me the name of Dr. Mark Berry. Dr Berry's office could not see us til February in his Stone Oak office. So, I called Dr Cohen. We have an appointment on Wednesday, January 14th at 8.40 am.

Visit with Dr. Rhame

Today during Johnathon's well-child care check up, Dr. Rhame started watching Ryan and then started examining his eyes. After chatting for a few minutes, he asked if there were any updates on Ryan.

I told him about our appointment with Dr. Fierro and the chromosome microarray test. We discussed that it will probably be typical to do have lots of tests and maybe even some re-tests till we determine what is going on with Ryan. He gave me the name of 2 pediatric opthamologists: Dr. McCash and Dr. Mark Berry, and asked me to get Ryan in to see one of them.

Developmental Pediatrician

We just got back from an appointment with Ryan's developmental Pediatrician, Dr. Mario Fierro, and Monical Tagle the CPNP.

Ryan is 5 months old. (He will be 23 weeks tomorrow.) He weighed 13 pounds 6 ounces and measured 23 3/4 inches. He is still below the chart for weight and in the lower 5th percentile for his height. They are however pleased with his growth since he is still going up. They were also pleased that he is able to lift his head up a little, and that he can kind of hold it up. (He's still a bit of a bobble head though.) They also liked that the dystonia (stiffness) in his lower body has relaxed a bit. They were happy to see that his pupils do change in size even though they are smaller than they should be. They think he is seeing some objects, but suspect that he does not have full vision.

They are still concerned that he lacks the ability to hold his head up. He also still has too much stiffness in his upper body, and especially holds his right arm in an abnormal manner. They also noted that his breasts are not symmetrical. And, they are concerned that the way his eyes kind of bounce around at times may be small seizures, and anticipate that the Neurologist will order an extended EEG.

They continue to watch his feeding habits, but feel a bit more relaxed about them as he is gaining weight and is not choking with every feeding. They suggested suctioning his nose before each feeding and after each feeding. Apparently, this will help if it's just that he is unable to clear congestion in his airway.

They have asked/recommended that the Occupational Therapist meet with him weekly instead of twice each month. They would also like a Physical Therapist to start meeting with him weekly.

They also recommended that we work on his visual tracking in dim light or in the black box. And, that we continue to work on tummy time, but perhaps make it in very small increments ... like 1-2 minutes. This will help to tone his core muscles. They also would like us to have him sit up on our laps more with our hands sandwiching him for support, and lightly supporting the back of his neck so that it doesn't drop backwards.

Tonight they had us go to the hospital to get blood drawn for a "Chromosome MicroArray". Dwight & I thought this had happened at the hospital; however, apparently they only ordered a blood test that checked for the most common chromosome disorders. (I feel a little frustrated about that as it is not what we were told was being done nor what we requested to be done.) The blood draw was not fun. They had a really tough time getting 3 cc's of blood from him. They were supposed to draw 5, but had to withdraw the needle as nothing else was coming. They called the lab and were told that 3 would be enough. I hope they're right. The test results should be back in 2 weeks. Just after we see the Neurologist.

They also debated doing an MRI. However, they would like the Neurologist to see him first. An MRI requires an infant being sedated, which has its risks. Additionally, the brain changes so dramatically between now and 1 year that if they can postpone it, they'd prefer to wait. Waiting will result in a better diagnostic picture and less risks with the anesthesia. So, we'll see whether the Neurologist thinks the benefits outweigh the risks.

Dr Fierro feels that the "dysmorphic appearances" are more indicative of a chromosomal abnormality than of Cerebral Palsy. Bottom line though is that we have no more answers than we did before, and we need to do more therapy and more testing.

It's been a very long day, but I'm so thankful for little Ryan. I'm thankful that he is not an irritable baby, and for all the progress that he is making. I'm also really thankful for all these specialists.

Humpty Dumpty

Recently I have been reviewing books on early childhood education. I've read them before, but I find I need to refresh my memory with each child. One of the books I was reading talked about nursery rhymes and their educational value.

Today I was at the Developmental Pediatrician's office with Ryan. The Dr and the Nurse Practitioner had really ticked him off by putting him on his tummy. Then they left to write up test orders. I was trying to calm him by "singing" nursery rhymes. I was slowly pacing the dimly lit room holding Ryan and "singing" Humpty Dumpty. You remember it ...

Humpty Dumpty sat on the wall
Humpty Dumpty had a great fall
All the King's horses, and all the King's men
Couldn't put Humpty together again.

I had repeated it a few times, and then it occurred to me...

Humpty Dumpty sat on the wall
Humpty Dumpty had a great fall
All the King's horses, and all the King's men
Couldn't put Humpty together again.
...But Heavenly Father could

I know it doesn't rhyme perfectly, but isn't it a great thought! Kings and men might not be able to do all things, but Heavenly Father can.

Are you looking at me?

In the early morning hours, with very little light in the room, I was nursing Ryan. When he finished nursing, while still snuggled in my arms, he seemed to be looking at me. Can he see me? Does he feel joy when he sees me?

Happy New Year!

We had a wonderful start to our new year. Dwight took me out to a nice dinner while the munchkins ate Lunchables (their choice) at home. We let the kids stay up a little late and then tucked them into their cozy beds. Then Dwight woke them up again at 11.30 pm to watch the New Year roll in. We had some bubbly peach juice and egg nog. (Did you know that I find the thought of drinking egg nog to be just disgusting?) But the kids love it with t a little whipped cream and nutmeg on top. Then we also had some toasted baguettes with pancetta and melted mozarella cheese, a smoky bacon cheese ball with ritz crackers, and some little weiner bites. I thought the kids would really love those, but not so much. Oh, well. We had fun talking and laughing for a little while then we all went to bed for the night.

Can you believe that it's 2009? I can't. It seems like it wasn't that long ago that Laura and I were celebrating the new year at her Mom's ... oh, and I also remember celebrating with Amber ... okay that must have been a while ago though ... I think we were like 12. Anyway the point is... I think it's crazy how fast the years go. It won't be long till we have children starting to get married. That's crazy. Of course, I think it'll be great to knit beautiful heirloom sweaters for the grandbabies! Won't that be great?!

So I know a lot of people are thinking about new year's resolutions at this time of the year. One year I spent tons and tons of time on them. I started by writing out what I would want people to say about me when I died. Then I sat goals based on that information. For example, I wanted people to say I was a good friend. So I sat a goal to write at least one letter each week. And, I wanted people to say that I was a gospel scholar. So I sat a goal to study one gospel topic each week. I won't bore you with all the goals from that year ... especially since I don't remember them all. I kept a few, and I forgot about a few before the end of the first week I'm sure.

This year I've been thinking ... I don't want to be a complainer. I don't think I complain a lot. So, I'm going to instead learn not to be critical. I am critical. Did you read that quote on the side bar? Sometimes our criticisms are worse than the behavior we're trying to correct. Well, I think that might be true for me. I used to work in Quality Assurance (like Dwight), and so I have been trained to be very detailed, and to find all the flaws in a program. Unfortunately, that crossed over into my life and so sometimes I can be very critical. (No, I'm not always. So, please know that I'm not judging everything you do.)

Anyway ... to this end we're changing some of the kids' daily expectations. I'm not going to require them to clean up the toys in their rooms daily. I hope I can tolerate it. I'm a little neurotic about it at times. And, I can be very critical of how they clean. We'll see how it goes.

But, I've also been thinking about another thing ... it's not a resolution. It's really more of a project. I've been thinking I'd like to re-read Jesus the Christ by Talmage. But, this time, I'd like to write letters to my children explaining what I read to them. Eventually, I'd like to put those letters into a book format, but for now, I'll just work on the reading and writing part.

Now, here's why I'm sharing this with all of you. I have a bit of an issue with fear of failure. I don't like to have people see me fail. So, I've learned to use it to my advantage. I have found that if I tell people what I'm working on then I feel accountable to really stick to it. So, there you have it. Now you know.... I'll be working on not being critical ... and on reading Jesus the Christ, and writing letters to my kids about it. (I'd also tell you that I'm going to be working on losing 10 pounds, but the sugar cookie dough in the refrigerator is still calling my name. I'd better wait till I'm really committed to lose the weight.)

Better go... Ryan has been throwing up today. After the last round, I laid him down on his playmat while I washed my hands and he fell asleep. Doesn't he look sweet?