Wednesday, December 25, 2013

Sunday, December 8, 2013

Tuesday, December 3, 2013

Doctors, Doctors, and more Doctors...whew!

Gabe has had lots of Doctor's appointments the past 2 months. They were follow-up visits for the most part...whew am I beat. Here's the breakdown: Pediatrician: All the annual labwork is normal. Gabe has thyroid labs and a CBC checked every year. Kids with Down Syndrome have a higher rist of leukemia and hypothyroidism. All is normal. We went ahead and tried a neck Xray again. Kids with Down Syndrome are also at risk for Atlantoaxial instability. AA is when there is excessive movement along C1 and C2 vertebae making the neck bones a little less stable. The Xray looked good with his head straight and tilted up. The xray of his head down was too difficult to read so the overall test came back inconclusive. Apparently it is a very difficult thing to diagnose on xray, so the new AMA guidelines say you don't even need to xray...just keep an eye out for changes in gait, headaches, head tilt, etc. Either way, best for Gabe not to do somersaults. We go back in the summer for his 5year check-up. GI: Gabe is small. His height is now 3'. His weight is slightly over 29lbs. This is about 25% for weight and 50% for height on the DS curve. The AMA is also suggesting not to use the DS curve anymore because it is not a good representation. Gabe is following his own curve and growing. He still has the feeding tube. We had talked about getting it out last year at this time, but that was before Gabe got RSV. He lost a significant amount of weight at that time. We also rely on the tube anytime Gabe gets sick because he just shuts down. Gabe's fluid goal is 30 oz/day. He was drinking about 20oz on his own in the summer. As soon as the weather got cooler, he dropped down to 8oz/day. I had a little heart to heart with the doctor explaining that I understand the need to keep the tube in place this winter to see how Gabe does with illness, however, the other issue we need to work on is how to make him thirsty in the winter months. I think he knows very well that this tube is backup for him and he doesn't have to work too hard at it. So, we are trialing him off water throught the gtube. As long as he stays above 15oz on the third day of trial, he is safe. He is consistently drinking 15oz per day now. Gabe did have a cold last week. There was 1 day where he refused to drink anything, but he ate pretty well through the entire virus. This leaves me hopeful. We'll see. We also have a feeding therapy appointment scheduled for Jan. to see if we can get through some of the behavioral issues with him not drinking. His video swallow study was normal, so we know aspiration or reflux are not issues. He continues to eat a regular diet all by mouth. He is eating a good variety. We are continuing to add butter and other fats to his food to plump him up a little. Hopefully we'll have a healthier winter so he doesn't drop any weight. We go back in 6 months Pulmonary: Gabe had his adenoids out this summer and his last sleep study looked great, so we are assuming any mild sleep apnea is gone. We don't need another sleep study for at least a year. Gabe did have some wheezing with his last cold. We were able to stay ahead of it. He was put on an antibiotic, steroid, and albuterol nebulizer and it seemed to do the trick. We got a nebulizer machine for home. It works so much better for him than the inhalers. Hopefully this will help with his reactive airway issues if he gets sick this winter. We go back in 6 months Cardiology: Gabe's EKG looks great. Still no audible murmur. His ECHO last year showed some leakiness around his mitral valve which is typical with the AVSD surgery. We go back in a year. ENT: After Gabe had his tubes replaced and ears cleaned out this summer, he passed his hearing test this fall. We go back in 6 months. Down Syndrome Clinic: We had Gabe IQ tested last month by the Psychologist at the Thomas Center at Cincinnati Children's. He scored developmentally around the stage of a 2.5-3.5 year old. This is to be expected with his diagnoses and does classify him as intellectually disabled. yes, this is hard to hear, but it was very interesting as to where he struggles. He did really well with verbal comprehension and vocabulary (he's always been a good talker). However, he did struggle with non-verbal things such as picture similarities and matrices. For example, if they show him a picture that has different colored cats on it, with some sleeping and others awake, they would ask "where is the white cat?". Gabe would point to the white cat with no problem. They would then ask "which cats are sleeping?". Gabe would point to the sleeping cats with no problem. They would then ask "where is the white cat sleeping in the box?" and he couldn't do it. He just can't put all the directions together. The conversation becomes too complicated. We talked alot about breaking down sentences so he could follow more. He does very well with letters, colors, numbers, etc. He also memorizes very well, so we have good pre-reading skills in place. They all seemed very pleased with how well he is doing on the spectrum of Down Syndrome. We are still waiting for the reports from yesterday. I think they will give us a better idea of how is doing than the IQ test done in one hour when he was tired. I am happy, to have the quantitative information from the IQ though. We can now apply to the state for the Michelle P. Waiver to get more behavior and community services for Gabe to help with potty training and running off and some safety behaviors. Speech: Gabe talks very well. We are working on him being more social with peers. We are working on him answering where and why questions. We are working on straw drinking. Gabe also tends to sings songs or quote sesame street, or just mutter to himself at times (mainly at night lying in bed). They said this is all just part of him processing things and it is better for him to be vocal than quiet. He will learn social norms and this will eventually fade off. OT: Gabe does not like to snip with scissors. We are trying to work on hand strength. We are working on tracing letters. Gabe doesn't quite have the stop and start down. His circles go round and round. He can make good lines and copy the lines you make, so that is a start. Gabe doesn't like to use utensils. Hands are so much easier. plate to mouth is not problem, but it is hard for him to get food on the utensil. PT: We are working hard on core strength. We are also working on going up and down stairs. We also got some good ideas from the Down Syndrome clinic on dressing himself. We were also able to rig up some blocks with a clamp to put on bike pettles. Gabe road a bike for the firs time yesterday! The PT was pushing about 20%, but 80% or so was all him. He was proud of himself and liked talking about the bike later that night. We are working on tall kneeling to help Gabe to be able to get off the ground in different ways. We are also working on different squats to help with his leg muscles so he can jump. Gabe is outgrowing his orthotics, so we will try to get him a new pair first of the year. We are currently doing swim class and will try to do more special olympics in the spring. Potty Training: We hit it hard this past weekend. I think we learned two important things: 1. Don't potty train 2 kids at once and 2. Distraction is our enemy. Anytime Gabe gets distracted, he has an accident. He only had about 2 accidents/day, but he just couldn't focus when stuff was going on. We sent him to school with underwear under his diaper to help him be more aware. He's close. Most kids with Down Syndrome potty train between the ages of 4-6, but some start earlier and others start later than that range. We'll keep trying. I think that is everything. We go to opthalmology in Jan., but that should be it for awhile. Whew.... Alyssa is doing great - one of her ear tubes is out, but no infections so far (fingers crossed). 68% for weight, 54% for height. She's an eater. She's such a sweet girl.

Saturday, November 2, 2013

Saturday, October 26, 2013

October is Down Syndrome Awareness Month.  I've thought about what I should talk about when it comes to Down Syndrome...should I focus on medical challenges, should I focus on therapy, should I focus on inclusion, should I focus on phases of grief ?...I'm not sure.  I think I'll focus on something that has been coming up more recent with Gabe as he gets older.  I noticed alot this summer that Gabe gets frustrated with himself when he can't do something.  He is quieter around other kids.  He cries because he's embarassed if he falls down or can't keep up.  He is noticing differences.  If he is noticing these differences, I'm sure friends and classmates are noticing these differences as well. do you explain Down Syndrome to a preschooler?  I think the key is to make it simple, and don't be afraid to ask questions.  Most kids are satisfied with simple answers and don't think much of long as adults don't make a huge deal out of those differences.  Here are some examples:

Why can't Gabe jump high like me or run as fast?  Gabe's muscles have to work alittle harder than your's to move.  He's learning how to do all that stuff.  You can teach him!  Show him how high you can jump!  Look, Gabe's trying to do it too!  You're a good teacher!  Good job Gabe.

Why can't Gabe talk very well?  Sometimes it takes Gabe awhile to make his mouth move to say what he wants to say.  It's like his mouth is full of marshmellows.  Be patient and wait for him to talk.  Maybe we could all sing a song together.

Just some ideas....there are books as well.  I haven't read "We'll Paint the Octopus Red" or "My Friend Has Down Syndrome", but I've heard good things.  We are very fortunate that our local Down Syndrome Association has a School Age Matters Program.  A leader from this group will go into your child's classroom and explain Down Syndrome to their classmates.  They even have the kids wear mittens and try to write their name to give them an idea of fine motor delay.  I will definitely use this resource next year when Gabe starts Kindergarten. 
We are so fortunate to have supportive friends and family who recognize all of Gabe's similarities and strengths.   

Sunday, September 8, 2013

Great weekend

We had a great weekend. The Buddy walk was this past Saturday. The weather couldn't have been better. The greater Cincinnati area has the largest Buddy walk in the nation. There were 10,000 people there estimated. It's always heartwarming to see the support all around us. Gabe's favorite parts were the dogs and the park. Our team raised about $2000. Special thanks to everyone who donated, walked, or both to show their support for Gabe and our family.
Today we went to a birthday party. It was at a roller skating rink and they also had bounce houses there. Gabe did really well in the inflatable bounce house. He was laughing and having fun. He couldn't stand up very well, but was still having a blast. Rollerskating with difficult for both of them but they actually liked being pulled by us. We had a great weekend.
School is going well for Gabe so far. His teacher said that he tries to hide that he can stand up and walk around so well now because he still likes them helping him so much. He doesn't like people to know all that he can do because he's stubborn. He seems to be very happy lately, and likes the routine. He loves going to school, and I think it really helps keep him focused.
Alyssa is doing great. She talks up a storm. She's getting bigger every day. She loves daycare also. During dinner tonight, she turned to me and said "thank you for cooking Mama". She's got an attitude to her, but she's really a sweet girl.

Thursday, July 11, 2013

2 surgeries in 2 days

I'm wiped. On Tuesday, Alyssa got PE tubes placed. She's had about five ear infection since Christmas time, it was time to do something about it. She fought the anesthesia some, but did really well overall. Today, Gabe had PE tubes placed again due to fluid build up that was affecting his hearing, a bronchoscopy to measure his airway, an adenoidectomy, sealants on his teeth, and dental x-rays. Lots of small things all at once. Hopefully removing the adnoids will prevent him from being such a mouth breather, resolve any lingering sleep apnea issues, and help him drink from cup a little bit better. He did really well. Much better than I expected actually. I think I still have some post traumatic stress from the surgical waiting area. I'm glad it's over. Both kids are sleeping now. We're taking tomorrow as a recoup day. I'm exhausted.

Monday, July 8, 2013

Feeling nostalgic

Happy 4th birthday Gabe!
Busy week ahead. I'll post more soon.

Wednesday, July 3, 2013

Family pictures

Gabe 4 years, Alyssa 18 months. 

Tuesday, June 4, 2013

Summer Vacation

We just got back from Summer Vacation in Siesta Key.It was a nice relaxing time.  The beach is beautiful and very kid friendly.  Gaby and Alyssa were both champs on the plane.  The condo we rented was definitely not baby proofed, but luckily nothing got broken.  Gabe loved throwing sand at the waves and Alyssa loved chasing the birds and picking out shells to put in the bucket.  As pretty as everything was, it is always nice to come home.  Here are some of my favorite picks from the trip.