A Little Good News

Today Ryan and I went to visit with his ENT Specialist. You might remember that at the last visit, Dr. Moe diagnosed Ryan with a submucous cleft palate, mild septal deviation, and a mild adenoid hypertrophy, and prescribed a steroid spray to reduce the excessive congestion the little guy had.

So, today we went in for our 6-week follow up. Dr Moe wanted to see the extent of the submucous cleft and was able to since the congestion is almost completely gone. The good news is that there is no hole. The muscles do not entirely align like they should; however, it doesn't require surgery, at least not for now.

We may need to consider surgery in the future, but we're talking about at least a couple of years down the road, and Dr Moe thinks we probably won't need it at all. (Keep those prayers coming!)

We can also start weaning him off the steroids. I'm sure Ryan will be very happy to be done with us spraying something into his nose.

Handsome, right?

For Jacob's birthday, Dwight bought him a new suit coat and a tie. This is what he wore today when he reverently passed the Sacrament.
Wow! It was a great Mom moment!

Doesn't he look handsome?

Appointment with the Gastroenterologist

Today Ryan and I went to visit the Gastroenterologist. It has been difficult getting this appointment. We have waited almost a full month to see him. As you may recall, he is 1 of 2 specialists in the San Antonio area. The other only works part-time, and is not able to do procedures. Unfortunately, Dr. Elizondo is not covered by our insurance, but at least he was able to get Ryan in soon. (We also called other GI specialists within a 150 mile area, and all of them had a waiting list that extends any time from August to October.)

I felt anxious about this appointment. I was concerned that I didn't have other options if we didn't like this Doctor. So, I was relieved when he came in and I felt immediately comfortable with him and confident in his skills.

Ryan was referred to the GI Specialist because his growth curve has started to flatten out. We are concerned that he may be aspirating his foods, and that he may not be getting enough nutrition to sustain adequate growth. Dr Elizondo explained to me that when you have a midline defect, such as Ryan's submucous cleft palate, it is common to have other midline defects in the digestive area. Thus, he has ordered an upper GI series, which is schedule for next Thursday. He also ordered bloodwork (CBC, complete metabolic panel, and TSH) and a urinalysis.

We have an appointment in 2 weeks to visit with him again, and to see his Nutritionist and Dietitician. The test results will all be back in by then and we will be able to discuss what needs to happen to ensure that Ryan is getting the nutrients he needs to sustain adequate growth.

We took Dad to the airport this morning and then resumed our busy schedule with appointments. It was great to visit with Dad! He is a great man and we are blessed to have him in our lives!

Jacob and I went this afternoon to see Dr Rhame for Jacob's 12 year old well-child care check up. Jacob is 58" tall and weighs 80 pounds. He is in the 50th percentile for his height and the 25% percentile for his weight. Dr Rhame said he could have a second helping of good foods, but cautioned that he not go home and fatten up.

Dr Rhame and one of his Associates also heard a possible heart murmur and would like Jacob to be seen by the Pediatric Cardiologist just to make sure it's a harmless heart murmur. We don't anticipate it being anything of concern, but we're just going to have it checked just to be sure.

Happy Birthday, Joyce!

We love you Aunt Joyce!

I'm currently enjoying some time with my father who is here visiting from Indiana. I hope you all are blessed to have an amazing father like mine!
While he was here, he went with us to the boys' soccer games, the zoo, and to Toys R Us.
All of the kids were excited to have Papa here. I think Deborah was the most excited. Papa was kind enough to follow her around as she ran excitedly from place to place. She loved having his personal attention!

Happy Birthday, Jacob!

Happy birthday to Jacob!Happy birthday to Jacob!Happy birthday, dear Jacob!Happy birthday to Jacob!Today is Jacob's 12th birthday! It's a big birthday with some new privileges. He will be ordained a Deacon, and he gets to start attending Young Men activities at church as well as participating in the Boy Scout Troop (without parent participation on campouts).For his birthday, we picked up Papa from the airport and then had lunch at Chama Gaucha. It was a delicious lunch. We came home and had a fun cake that Jessica made for him, opened gifts, and then sent him off to his first Young Men's activity.He is also planning to go to Incredible Pizza with one of his friends, but that is going to wait till a Tuesday night so that he can enjoy the unlimited games.So to Jacob I say: Happy birthday! I love you and I appreciate all you have taught me. As I've said before, I am a better mother because of you. I'm pleased with all the progress you have made this year. You're doing great and I'm proud of the young man you are becoming! I love you!

Johnathon has been invited to a birthday party for his good friend,
and he is
SOOOOOOOOO
excited!

Urologist

Ryan had an appointment with an Urologist today. He was quite mad about them examining his boy parts. When the dr was done with the exam, I nursed Ryan to calm him while the dr explained the needed surgery.

As I was nursing him, I looked down and saw this:I thought it was so funny that I grabbed my cell phone and took a picture! I'm still pretty entertained by this picture!

As for the surgery, Ryan needs to have a "double orchiopexy surgery with hernia repair." We are waiting to schedule the surgery until we meet with the ENT again and the Gastroenterologist. If they are going to surgically repair Ryan's submucous cleft palate, or if they are going to surgically implant a feeding tube, we may be able to combine the surgeries. We will see both of them later this month. I'll keep you all posted.

We had an end of year picnic today with all of our co-op friends. It was so enjoyable. We hope to see everyone a lot over the summer!

Another dr's appointment

Today we had an appointment with the Developmental Pediatrician. This is my least favorite appointment of all. It seemed that during the past 3 appointments with this Dr that all they really told me were the milestones that Ryan should be reaching ... but hasn't. I'm really very aware of these milestones and don't really need someone to tell them to me. They also push therapy a lot.

We still covered all the milestones today, but I also felt that I received some value from today's appointment. We discussed the growth and feeding issues we've been having. I explained that my Pediatrician had referred us to see a Pediatric Gastroenterologist but that we had not been able to get an appointment scheduled yet. So, she called and we now have an appointment for May 20th. She also ordered a modified barium swallow test with a Speech Pathologist and Radiologist. This is one of the tests that the Ped Gastro specialist will want. Having the test done prior to our appointment with him will hopefully speed that process along.

We also discussed that at our next appointment we're going to discuss the need for a special car seat and probably a wheelchair/stroller combination. Typically you move a child to a forward facing carseat when they are 1 year old and at least 20-22 pounds. However, Ryan will need to stay rear facing until he has better head & neck control. I feel a sense of relief that someone will have information on the available resources to meet those needs. So, I can put that out of my mind until October when we go back.

So, the next dr's appointment will be on Wednesday morning ... the Urologist.

Bowling

We took the kids bowling today and had a great time! I wish I could have caught on video the fun of watching the kids bowl. Johnathon ... well, imagine a director leading an orchestra and that is what Johnathon looked like as he watched his ball roll down the lane. Deborah played all of my 2nd frames ... and I still won the first game and gave Dwight a close run for his money on the other game. It was lots of fun.

Sorry the pictures are a little grainy. Hope you enjoy them anyway.

I should have known better...

My sweetheart took me on a date tonight. When I got out of his truck, I put my diaper bag over my shoulder. (Yes, we had Ryan with us on our date.) Then I noticed that my bag was REALLY hot. So, I said to Dwight, "Something is creating a lot of heat under your dash." I opened the change pocket and noticed that the change was really hot, but the AA batteries were so hot they were warping! Perhaps you can already guess what really happened... I still hadn't clued in though. So I said to Dwight, "It's so hot that it's warping the batteries in my bag." Dwight freaked out a bit. The batteries were so hot I couldn't pick them up. Thankfully my strong, brave sweetheart pulled the batteries out of my bag and threw them down on the ground. I wish I had my camera with me then so that you could see how warped the batteries were.

Yes, I'm generally an intelligent being, but it never occurred to me that putting 2 AA batteries in a pocket with a bunch of quarters, dimes and nickles would be a problem. (Dad and Mom, when you read this you were having flash backs of me wringing water out of the towels onto the floor, huh?)

The past few weeks at Jessica's art school, they have been creating movie posters during Visual Arts. Here is Jessica's:

9 Month Well Child Care Check Up

I took Ryan to the Pediatrician's office yesterday for his well-child care check up. A "well-child care check up" with a special needs baby certainly isn't what it sounds like, nor does it even resemble the countless other well-child care check ups I have been to with other children.

Ryan is now weighing 15 pounds and 14 ounces, and he is 26 1/2 inches. The good news is that he has gained weight ... almost a pound in the last 8 weeks. Unfortunately, he's still not even in the bottom 5% of the growth chart for height or weight. Some of you probably remember that this is the case with Deborah as well. However, with Ryan, his curve is starting to get flat, meaning he's falling further from the chart with each visit. So, we now need to see a Pediatric Gastroenterologist.

He is still nursing full-time and we have introduced "solids". He had been doing really well with stage 1 foods so we went to stage 2 foods. That hasn't gone so well. He won't swallow them. Last night was the first night in about a week that I've been able to get him to eat solids at all. The dr suggested we go back to stage 1 foods for now. It could be that the thicker texture of the stage 2 is more than he can handle.

So, we'll see. We need to rule out any physical reasons why he might be struggling with eating and gaining weight. If we can't get his curve up more than we'll need to put a feeding tube into his little tummy.

Additionally, we've been referred back to the Geneticist to discuss the possibility of any additional Syndromes. The new diagnosis of the submucous cleft palate opens back up the possibility that it could be one of numerous syndromes. So, we'll see Dr. Stratton in June.

And... we also need to see the Urologist again to discuss surgery sometime in the next 9 months. I'm waiting to hear back from his office.

So, while we have 3 new specialist appointments, we also have good things ... his iron levels came back in the normal range ... low normal, but normal ... his lead test came back normal, and best yet ... we've now been seizure free for 18 days! I love our Pediatrician!

We had an amazing pediatrician in Dallas but we did not have a good Pediatrician the first 2 years we lived in San Antonio. The kids had to be really, really sick to justify an appointment and then we'd end up spending 4-6 hours waiting for a 5 minute glance by the dr. It was awful. When we had Deborah, Dr Rhame was the pediatrician on call and we've loved him ever since. I can't imagine dealing with this experience with any of the other pediatricians. It would have been really, really much harder.

Okay ... must run ... lots to do still. Thank you all for your love and support, and for all your prayers!

Jacob's Play at Co-Op

Jacob has been taking a drama class at our co-op. All of the kids seem to be enjoying it a lot! (Thanks, Sis Gottschalk!) They came to the younger group's co-op today and performed a cute play with all kinds of animals. Here are just a few pictures...