July 5, 2011 - Get ready for a long post. There has been a lot going on in the last 6 or 7 weeks!
To continue from May 12th Megan had a fever for days – started on Wednesday and lasted until Saturday. Then Sunday night I was getting her ready for a bath and noticed she had broken out in a rash. We had tried her on a new food so wondered if it could be an allergic reaction. That Monday I decided to take her to the pediatrician and she immediately diagnosed her with roseola. Said Meg had a classic case – 4 day fever and then rash. Said she was highly contagious until the rash started to go away. Are you kidding me? Rash started going away on Wednesday the 17th and she was allowed back at daycare on the 18th. It did cause us to miss our last NICU FAC meeting on the 17th. Megan started acting like she had cold like symptoms during this time so we took her to the doctor the next Monday to find she had a sinus infection. Are you kidding? So back on antibiotics we went. By Memorial Day Weekend she was feeling good but the weather wasn’t the greatest so we didn’t do much.
Ryan’s preschool had a tea party the end of May that Scott & I went too. They dressed the kids up in costumes and then they dressed us. They sang songs that showed us they could set the table and then we had PBJ, apple cider and desserts. It went by so fast and we were trying to deal with Mr. Fussybutt that we didn’t really have time to eat any of the goodies.
On June 2nd, I was playing with the kids on the floor before Scott got home and Megan went from the floor to standing (which she has been doing although not so much during the weeks of sickness) and then started walking. After a few steps she dropped down. I got all sorts of excited and waited to see if she would do it again in case I was just seeing things. She did it again. Then I got the camera out and got it on film. Megan is walking! She was sure proud of herself! Are you kidding me? Is that really how easy it is? With all we have to do with Ryan to get him to do something Megan’s whole development process has just been amazing to me. Ryan originally was not too sure he liked it. That first night she walked, he got fussy and was swinging at her trying to knock her down. Could we get some motivation out of this from him? She is walking faster and faster now and just this weekend has started to climb on things. This evening she climbed onto the fireplace. Lord help us!
The first Sunday in June we took the kids to the zoo and they – well at least Megan – enjoyed it. Megan has this laugh that she does especially around Uncle Tucker that lets you know she likes him but isn’t too sure how close she wants to get to him. Well she was doing this repeatedly at the zoo. It was rather cute. They were doing giraffe feedings so Scott & I did that and the kids watched. Megan had that laugh so I was worried if I put her up to the giraffe and he went after the lettuce in her hand she’d lose it. We’ll try that another time.
The 2nd weekend in June we had a BBQ with the preschool families. It was fun but I still hardly know any of them. Going to have to work on that!
The weekend of June 17th Scott & I went to Austin for my birthday. I have not been back there since we moved back to Idaho. It was wonderful being back. We both missed it there and it kind of felt like we never left. It was 105 each day with low humidity (which is rare this time of year). We didn’t get to see any great thunderstorms like we hoped but we’ll survive. We did some shopping, saw Chuck and his parents, had drinks at the lake, drove around, ate good BBQ at Rudys & Salt Lick, and went to a Round Rock Express baseball game with Jack Ingram concert afterwards. We truly needed the break. It was great to get full night’s sleep but Sunday I woke up with a sore throat. By the time we had our layover in Denver Sunday night, I was sick. I tried very hard to keep it together and not throw up. I ended up staying home Monday and by the beginning of the next week I was in the doctor’s office for a sinus infection. Grandma Pam and Aunt Lindsey watched the kids and Megan did ok but Ryan was a turd. He refused to eat for them, wouldn’t stand, just a complete turd. They would call us and put us on speaker phone when they tried to feed him because he refused. He’d eventually get something eaten but it wasn’t great. When we got home Sunday night we were adjusting him and he woke up, saw us, gave pouty lip and cried. Scott laid with him for a long time and every time he tried to leave Ryan would wake up and cry so we tried moving him to our bed. This caused Ryan to have a hard time getting comfortable so I finally took him back to his room and rocked him like we do every night and he finally went to bed. He definitely was not too happy with us leaving him and not letting him know it. We’ll have to remember that when we go to Vegas in September!
On the 25th we went to a BBQ at cousin Nick’s house. It was outside on their big patio by the pool and waterfall – lots of area for Megan to walk around. She had a blast. Towards the end of the night we got her feet in the pool and had I remembered the little swimmers we would have got both kids in as they both enjoyed their feet in the water and really wanted to get in. The next morning after we got up Megan went grabbed her sandals (still in her pjs) and sat down for me to put them on so she could go outside. It was sooo cute. Needless to say we’ve been spending lots of time outside since then. We got the kiddie pool out this weekend and Megan enjoyed it but we realized not enough room to put both kids in it so we got a bigger one and they have been having fun in it. Megan has had a blast actually. It is so cute.
She got sent home June 24th with a fever and definitely acted like she didn’t feel good but acted better on the 25th. It does appear she is cutting 4 more teeth so we think it was just teething but she also had a cough. On the 29th I got a call saying that a kid in the adjoining room had the croup and Megan sounded worse than this kid so they wondered if she had it too so I took her to the pediatrician. No croup but guess what? Ear infection. Again??? I asked when do we get sent to Dr. Beck? The pediatrician didn’t know if Dr. Beck would want to see her yet. We had an appointment on the 30th for Ryan so I said I’d ask. The pediatrician wrote up all the sinus and ear infections Megan has had since February and yep Dr. Beck wants her in 7 days after Meg finishes this round of antibiotics. So we’ll head there on the 20th. Dr. Beck thought Ryan looked great so she doesn’t want to see us until next spring.
Ryan has stayed pretty healthy. On June 26th he was running a fever and acting like he didn’t feel well so we kept him home on the 27th. He appeared better and went back to school. Today, though, he has green goop coming out of his eyes so we’re watching to see if we need to take him in.
We ended up staying home this past weekend. Normally we go to McCall for the 4th but with how busy our weekends are this summer and we’ll be up there in a couple weeks for Lindsey’s wedding we decided to stay home and get stuff done. We did get a lot done and spent a good amount of time outside with the kids. The best thing though is neither kid woke up from the fireworks last night and there was some loud stuff going off around us. Whew!
Megan is starting to say more words and do gestures. She’ll say all done and sign it when she’s done with something like eating. She’s been signing please but not saying it. She understands what a ball is and says it. Just this past week if I say ‘do you want to go get your pjs on?’ she’ll head to the bedroom. If I say ‘are you ready for bed?’ if she is she’ll point to her room and head towards it. If I ask if she wants to eat she’ll either sign it or just bolt for her booster chair. Again amazing what she understands. I am sure most of you are like this is normal – you just have to remember where we’ve been. We know it is normal but we haven’t been there yet with Ryan. Everything has been such a struggle and fight and hard work to get where we are which is still so far away from where Megan is.
Ryan has actually been making progress with eating. His caretaker has been trying the Gerber Graduate meals on him and he’ll either eat some of it without issue or all of it without issue. Scott & I have also been trying them and he’s done well for us. One night we had the Morton’s pot roast you get at Costco and I chopped it up really small and then blended up some mixed veggies so they weren’t true puree but grainy/chunky and he ate them. The only time I got a gag is when I think he got too much or the piece of meat was too big. I can’t believe we’re making some progress. Now if we could do something with his drinking. We’ve been working with a thickener that we put in water in hopes that it will give him more control and that is going so-so.
He broke his glasses around the 10th of June. Broke one arm off the frame and cracked the lens. Are you kidding? We go in July 12th couldn’t you have waited a couple weeks longer? I took them in to get them fixed, luckily they are still under warranty. They gave me a temporary fix on the frames and we’re dealing with the lenses until our next appointment to see if his prescription has changed. While we were at the appointment with Dr. Beck he broke the other frame arm. I took them in to get a temporary fix and found out that the manufacturer has discontinued his frame and they are all out of stock. Great. We hope the temporary fix will last until we can get new ones. Turkey!
Luckily we don’t have much going on this week in terms of appointments. Next week preschool is closed so Scott is taking the mornings off to stay home with Ryan and then the caretaker will be in as normal. Monday morning bright and early Ryan is scheduled for a procedure. He’s due for Botox and this time we decided to try it the way our new orthopedist does it. He uses ultrasound to find the right muscle, then does nerve stimulation to make sure it is the optimum spot and then injects the Botox. This of course requires anesthesia so it is considered an outpatient surgery. We’ll be doing that at 7:30 at St. Als. We’ll see how we like them compared to St. Lukes. Tuesday he has his eye appointment and we’ll be ordering new frames and lenses. Both kids start swimming lessons next week for 3 weeks. Megan & I will do the mommy & me classes Monday and Wednesdays and Ryan will have his adaptive classes on Tuesdays. We’ve got Lindsey’s bridal shower this weekend, her wedding next weekend and then Ryan’s birthday the next weekend. Very busy at our house.
On a serious note, a friend of mine at work has a rare leukemia/lymphoma cancer. He is actually 1 of 3 that has this type of mixture so it is very rare. He needs a bone marrow transplant as his best choice but his bone marrow is also extremely rare so they have not found a match yet. Unfortunately his cancer is aggressive and so they have opted to go the cord blood transplant route. They have a good match for this and are in the final stages of prep (giving lots of chemo and radiation to kill all the marrow). Transplant is slated for Monday. While you may not know my friend Shawn, he and his family could sure use a prayer for a successful transplant.
I hope everyone knows the wonders of cord blood. We had planned to bank Ryan's cord blood when he was born but I did not have it setup before he was born and with how urgent his delivery was there wasn't time. Luckily with Miss Megan we did have time and I had it lined up well ahead of time (ready to go at 24 weeks just in case). There are many things cord blood is treating - like cancer. Had we banked Ryan's we could be part of a study at Duke University for kids who have cerebral palsy and their own cord blood. They are transfusing it back into them and having wonderful results. I hate that we don't have it to participate but we'll wait for the study when they use sibling cord blood on cerebral palsy kids. The problem with this one though is it would be considered a transplant since it is not his own cord blood and Ryan would have to undergo chemo to get his counts down enough to get the stem cells to engraft. While that does not sound attractive, some of the results are so we're keeping our fingers crossed though that this research will take place down the line!
I’ll try not to let it take me a good 6 weeks next time. Definitely causes the blog to be too long and I know I’ve missed lots of stuff. It has been so busy! Sad thing is most of our weekends are booked through summer and then football starts!