Nice Weather

The last 2 days we have had gorgeous weather! It has been sunny and around 60 degrees Monday and Tuesday. The boys and I took advantage of the weather and spent lots of time outside.

Monday morning I dropped Zak off at daycare which he was not very happy about, but as always he was fine as soon as I would out of sight. Then Ryder and I headed to to story time at the library in Aberdeen. The Monday morning story time at that library is "hosted" by the Infants & Toddlers Program. The teachers from Ryder's therapy class are at the story time to help parents utilize skills the kids are learning in their therapy and in the class. I try to get to this story time as often as I can sot hat Ryder gets extra socialization time to work on his skills and it helps to have the teachers there for extra support and ideas. This week Ryder was not as cooperative as normal so one of the teachers had him sit with her and she actually got him to walk up to the front of the room and help with the felt board during one of the stories. That is a big deal for Ryder because it required him to interact with other kids as well as use his language skills. I was so proud of him! At the end of story time they always do an art project. This week the books were about food so they made necklaces using yarn and cheerios. Ryder put a few on the string and then I did the rest because he was getting frustrated with not being able to easily do it. Once the necklace was done he proceeded to eat every piece of cereal before we even made it out of the room!

We then headed across the street to his therapy class. There were six kids in the class this week which is more than they have ever had in this class. Ryder was obviously overwhelmed because he wouldn't say a word during circle time, story time or music time. During art time he surprised us all when he actually finger painted because he normally hates having stuff on his hands. He didn't want to at first, but once I dipped his finger in the paint he enjoyed making circles. He did not get as messy as the other kids, but at least he had fun. His favorite part of the class was when they got to go outside and play on the playground since the weather was so nice.

After class was over Ryder and I went to Chick-Fil-A to get some lunch and then picked up Zak from daycare. When we got home we decided to have a picnic lunch on the front steps with our Chick-Fil-A!

Monday evening when Ben got home from work he wanted to pack up a picnic dinner and take it to the playground since it was still so nice outside. So that is what we did. Although the boys didn't actually eat while there we all had a good time.

Yesterday I took the boys outside to play in the front yard for about an hour while we waited for Ryder's OT to get to the house. They enjoyed bouncing rocks off of the snow tube. They also tried to climb the tree in the front yard and we took a walk around the community.

This nice weather has me very impatient for Spring to get here! Today it is cloudy and cooler. It is supposed to rain off and on the rest of the week and through the weekend so I am not sure how much time we will get to spend outside.

I also wanted to update everyone with some stuff about Ryder. The pediatrician wants him to see a Pediatric Nutritionist because of his issues with weight gain along with his limited diet and chewing issues. I was able to get an appointment for Friday morning, but then I found out our insurance plan will only cover a Nutritionist if you have Diabetes and not for anything else. I was pretty upset about this so the insurance person got me in contact with their case management program. I spoke with a nurse from case management last night and she is going to contact the pediatrician to get growth charts and what not. Then she will try to convince the insurance company to make an exception and allow Ryder to at least see the Nutritionist once. She said she can't promise anything and it won't happen quickly, but she will do her best. We really want to see the Nutritionist because he is already on a dairy-free diet and we are really thinking about going gluten-free as well for various reasons, but the appointment would be about $500 if insurance won't cover it so that is not possible for us.

Day in PA...Lots of Pictures!

Today we made a trip to PA to visit with Ben's grandmother and Aunt who were in town from NH to see Jade for her birthday. We left the house around 10am to drive to their hotel in PA which was only about 45 minutes away from our house.

When we got to the hotel Jade was already swimming in the hotel's indoor pool so the four of us quickly changed and joined her in the pool. At first Ryder was crying and not happy about getting into the pool, but I just carried him in and he got used to it pretty quickly. Once they both got used to the pool they had a blast.

Zak LOVED jumping into the pool

Ryder also liked to jump in as long as you held his hand

Zak swam the whole length of the pool without

us touching him using this tube

After we dragged the kids out of the pool we went to their hotel room and changed into dry clothes. Then we gave Jade her birthday present, but Zak insisted in opening it for her! All of the kids sat and played with The Littlest Pet Shop hamster we got her.

We then headed to lunch at Cracker Barrel. I was very excited when I saw there was a Cracker Barrel right by the hotel! The boys loved playing on the rocking chairs while we waited for our table and once again after we finished eating. Of course, I had to buy some Mallo Cups for myself before we left Cracker Barrel.

When we got home the weather was still gorgeous so we let the boys ride their scooters for a bit. The four of us went for a walk (boys with their scooters) around the community and then headed back home. This weather is making me very impatient for Spring to get here!

Feeling Better

As I posted last night, the boys are both feeling better. Now that we know neither of the boys are contagious it has allowed us to get out of the house a little more than before. After I got back from the pediatrician with Ryder we all went to pick up Rich's truck to use for a run to the dump this weekend. Ben then had to go to work for a bit so the boys and I went home. Once Ben got home from work we took a trip to WalMart and Target looking for some options to deal with the boys' clothes in their bedroom since we have been unsuccessful in figuring out how to keep the locked out of the dresser. We ended up buying some wire racks to put in the closet that I will use for folded clothes and we will not put clothes in the dresser until we find a better way to keep them locked out of it! Here are some pictures from our day...

Zak told us he was shooting the cars outside

Ryder eating his "yello"

Ryder has not gotten to the point of telling us when he needs a new diaper. Add that to the fact he is on steroids right now which generally makes him pee a TON! And then add in that he was busy eating his Jello and this is what you get...

Zak wearing his Yankees socks which now have a hole in them

Last night after we ate dinner it was time to load the truck with stuff that Ben and Rich were going to the dump today. The boys love "Poppy's big truck" so they were more than happy to help out.
This morning the boys were wise awake at their usual 6:30am time. Ben and I decided we would take them out for breakfast before he left to go to the dump with Rich. We went to our favorite place in the world...Chick-Fil-A. Ben left for the dump and the boys and I came home. Once we got home I let them ride their scooters outside for a few minutes. This was the first time they have ridden them outside so they had a blast!

They did not want to come inside so I told them we could watch a movie. They chose "doggy movie" which means Bolt. I caught Ryder almost asleep during the movie! I know I am ready for a nap since they got us up so early...

Tomorrow the four of us are going to make a trip to PA. Ben's grandmother and Aunt are going to be in PA for the weekend visiting some other family so we are going to drive up to their hotel for lunch and some indoor swimming. The hotel is only about 50 minutes away from our house so it will not be a long drive. I am sure I will have pictures to post after our trip.

Health Update

Everyone seems to be on the mend finally. I got a call from the pediatrician last night to tell me that all of Zak's blood work came back normal. This means he doesn't have Mono as well as there is no evidence of infection. She said this means Zak had Roseola. If he has a runny nose or cough it is just a cold since the blood work was completely normal.

This morning I took Ryder back to the pediatrician for his follow-up appointment. She checked his ears, nose, and throat which all looked good. Then she listened to his lungs. She said there is no more wheezing in his lungs and they were completely clear. We need to finish the steroids and antibiotics to be sure he doesn't relapse with it again, but he is definitely doing better!

Baby Fever

There seems to be a ton of people expecting babies sometime soon. One of my friends on FaceBook actually knows 28 women who are pregnant right now! Personally, I know 4 that are pregnant and can't wait to get the chance to meet the babies and hold them. I really love babies and truthfully would love to have one more. Ben and I have talked about the idea of having another baby, but no 100% decision has been made yet.

Last night one of the 4 babies made its way into the world. Kimberly and Jesse (who live in FL) had their baby boy around 9pm. He weighed 7 pounds 12ounces and was 19 inches long. Baby boy Durner doesn't have a name yet, but once I hear word of the decision I will let everyone know. For those who don't know who Jesse and Kimberly are I would try to explain their relation to me. My mom is married to Chuck...Chuck is Vicky's sister...Vicky is Jesse's mom...Jesse is the father to Baby Boy Durner. Hopefully that makes sense! Here are a few pictures...

Noah

(yes, they announced the name)

Jesse and the baby

The happy family

As for when the other 3 babies are expected...Amy & Justin are expecting a baby girl (Abby) the end of March, Tracy & Dave are expecting a baby boy (Kyle) the end of April, and Alison & Mike are expecting a baby girl (Meghan Grace...I think) is due the beginning of July. I am extremely excited that there will be two new babies for me to meet and hold during our trip to FL at the end of April!

And now for some odds and ends...

The boys have really been boycotting bedtime! I always put them in their bedroom in the afternoon to try and get them to nap, but most of the time they just run around and tear their room apart until I let them come out. Today was no different and here is what I found when I gave in and let them out of their room...

Ryder's thigh...looks like a bite mark to me!

There are locks on all of the drawers on this dresser, but that did not stop them from emptying out every drawer and then using one to get to the humidifier and heater!

I felt like all I did today was give out medicine and breathing treatments. I hate when the boys are sick because they tend to need medications and multiples breathing treatments. Here is Ryder relaxing during his morning nebulizer treatment...

Ryder during his mid-day treatment

Zak did something today that really surprised me and made me pretty mad. He was trying to climb up the fridge and some how pulled off the piece of plastic around the ice maker. A few little pieces broke off, but I was still able to get it to stay in place. Hopefully it will not start to fall off!
Over the weekend during a trip to WalMart we decided to buy a new fish tank for our two Beta fish. We found one that has a divider so both fish can be in the same tank, but not fight. It also has an easy valve at the bottom that allows you to drain some water and add clean water.

And VZ....she fits in great now. She is often found sitting and napping in the boys' chairs at the table!

Sick Once Again....or Still

Last time I posted I mentioned that Zak had a fever on Saturday night. Things have gone downhill since then. On Sunday both boys still had the runny nose and cough, but no fever. Yesterday when they woke up Zak had a low grade fever and Ryder had a worse cough. Zak spent the day with Rich while I took Ryder to his therapy class (he had missed it for a whole month due to testing, illness and snow so I really wanted to get him there) and eye appointment. Last night both boys became very clingy and cranky once again. Overnight they woke up several times including once each with vomit because of a coughing spell. Also, yesterday morning I noticed a rash on Zak's neck and between his shoulder blades but it wasn't bothering him so I forgot about it. Last night when I changed him into pj's I discovered the rash had spread all down his belly, back and into his diaper area. He still didn't seem to know it was there so I let it go for the night.

This morning as soon as the pediatrician's office opened I called and got them both an appointment at 8:15am. When Zak woke up I looked and found the rash to be just about the same as it was last night. But Ryder had gotten worse with a very bad cough, wheezing, and thick green mucousy snot running out of his nose non-stop.

First, the pediatrician looked at Zak and decided to do a strep test because his throat looked really red. That test came back negative. She then gave me a lab slip to go get blood work done on him to check for Mono. She explained that his rash looks like Roseola, but having the red throat with a negative strep test could also mean Mono. She will call me back with the results from his blood work. If the Mono is negative then she is going to say he has Roseola. Because of Zak's low immune system we will just need to keep a close eye on his breathing and treat any fevers he has along with making sure he stays hydrated. Both Roseola and Mono are viruses so there is nothing really to do for them other to watch for secondary infections.

The pediatrician then looked at Ryder. She was very concerned about his breathing because his respiratory rate was too fast and his lungs were full of junk causing him to have decreased breath sounds in both lungs. Also, his pulse ox was low at 89. So she did a breathing treatment in the office. During the treatment his pulse ox went up to 97 and once the treatment was done it stayed steady around 95-96. She said even after the breathing treatment she could still have lots of wheezing and junk in there. She prescribed him antibiotics for 10 days and oral steroids for 5 days and diagnosed him with bad pneumonia. I am supposed to do the breathing treatments every 4 hours and if his wheezing doesn't improve or the respiratory rate remains fast we might end up in the hospital. I am hoping to avoid that with getting the steroids and antibiotics inside of him quickly! We are going back in 3 days for them to listen to his lungs and hope for improvement. She said with all the snot he has that could mean he might also have a sinus infection as well so the antibiotic will work for both types of infections.

Once we left the pediatrician's office we went straight to the lab to have Zak's blood work done. He did amazing! He let out a scream when the needle went in, but then he laughed and talked with the tech while she took out 3 tubes of blood. He was very excited to get a sheet of stickers afterwards. Then we headed to Chick-Fil-A for some breakfast because I knew they have almost no appetite, but I figured their favorite hash browns might be good motivation to eat and I was right! We then took the prescriptions to CVS and bought my some soda while waiting for them to be ready. While there I found out that there are no more refills for the Albuterol we use for breathing treatments so I had to call the pediatrician's office to ask for them to call in a prescription which can take up to 72 hours. UGH!

Now we are home!

When I got home and checked my e-mail I was happy to see an e-mail from the genetic counselor! She said the Dr.Hamosh would like her radiologist to see the actual images from his previous MRI which was done at 12 months old. She said that they want to double check to see if these lesions were or were not in that scan. So I need to get a CD with the images sent to them as soon as I can. I called AAMC to find out what I needed to do in order to get that done. There is a form online I need to fill out and send them (fax, mail or drop off myself). Then they will get the images together and sent to Dr.Hamosh. I could choose to pick them up and mail it myself, but I don't know that I want to drive into Annapolis with 2 sick kids so I will just hope the hospital really gets them mailed! I am going to try and run out tomorrow to fax this form as long as the boys cooperate (I might call for some help from Rich or Laura if the boys are not cooperative!). Once they get the images and can compare the two scans I will hear back from them. The genetic counselor said Dr.Hamosh has some recommendations for us either way (if the lesions were there before or if they weren't there before), but they need to wait and see the images before moving ahead. If the lesions were not present in the 12 month MRI they think that there might have been a small stroke (or possibly bad infection) which caused these lesions and therefore causing his recent regressions or lack of improvement in some skills. I am not sure what the thought process is if these lesions were present in the previous MRI. But from the e-mail I am now realizing the location of these lesions must be some place that is causing some of his "issues" or some place that can cause other "issues". I was hoping to hear back that the location of the lesions should not cause any problems and that they were "benign", but that doesn't look the case here. I will continue to update as I get more information!

As for Ryder's eye appointment, it went well. He did not enjoy the drops being put into his eyes, but otherwise he did amazing. The eye doctor was even able to get some pictures using a machine that he is only able to use when children are sedated, but Ryder didn't mind at all. He does not have perfect vision. The doctor explained to me that with kids this age they only use glasses if their eyes are at two different prescriptions, but Ryder's are the exact same so he doesn't need anything right now. We will follow-up in 6 months to check for any changes.