Saturday, June 21, 2008

Look at Max now!!!

He pulled himself up!!!! I walked into the room and there he was standing. Awesome, huh?!
Is this my child??? He wouldn't even take a bath a month ago and now he LOVES the pool! Click on the picture to see it bigger. His face is so cute!!

This is what Tyler did one morning before waking us up. He lined up all the matching containers on the counter and stacked up the soup. He could be VERY instrumental later in helping mommy organize my life. He loves to count and line stuff up. Too cute!

Life is good. Max is probably 20 lbs by now. We are on a waiting list for a feeding therapist (there are 20 people on the list!!!) so we'll see how long it takes. In the meantime, he is eating very thick foods and doing well. He has a fever today thanks to his vaccinations but it will pass. He is only taking one bottle a day now. Everything else is spoon fed. Way to go Max!!! I keep him on the bottle on purpose and will probably do that for a while. It is a good bonding activity and comforts him at bedtime. Being laid down for bed is not his favorite thing. He would much rather be held but rarely falls asleep in my arms. He will fight sleep forever and just get more and more cranky if I hold him. I don't let him cry to sleep though. So, if he cries for more than 10 seconds, I pick him up, rock him longer and try again. I wouldn't suggest this technique unless your child is adopted. :-) It makes for a long evening sometimes. But, he is getting more trust that I will be here tomorrow and he can go to sleep.

We put our papers in yesterday to change Max's name and re-adopt him in the US. This just helps build a paper trail here and give him a US birth certificate, SS # etc. I can't wait for his name to be Max officially, so doctor's offices quit calling to confirm appts for my daughter!! The attorney said it could be a few weeks until court, or several months. Strange, huh? We get the attorney FREE through my husband's work which is very nice. So, hopefully it won't take too long to get the court date. I'll keep you posted.

Wednesday, June 11, 2008

I love you through "Thick or Thin"

We had Max's Upper GI swallow test yesterday. He was not thrilled drinking barium but he drank enough to get results (and to poop white!) Basically, he aspirates anything thinner than pudding consistency! Not great news, but... the great news is that it is NOT structural. Meaning, it is just because of his lack oral motor control. So, the therapist recommended 2-3 months of feeding therapy and then come back to check it again. I was relieved to hear that! We are not supposed to give him any liquids. I don't know how that is possible. I meet with the pediatrician tomorrow to figure it all out. We are also upping his Prevacid for reflux.

Oh, I talked to an elderly lady while waiting in the hospital for the test. She asked me what Max's "condition" was called. I told her Down syndrome. She said, "Some of the people with Down syndrome are really pretty advanced." I agreed, of course. She told me she had seen "So You Think You Can Dance" when the young man with DS was on there. She said, "He was a bright boy. He spoke well and seemed to have a good life." I was SO thrilled that the boy on that show had been given air time. He truly did what he set out to do...change people's opinions. Way to go!!

Monday, June 9, 2008

Weight check today

We had a weight check today. I am SOOO excited to announce that Max is now 19 lbs, 10 oz! He has gained 36 oz in 21 days!!!!!! How amazing! He came to us at 17-6 and we were hoping for a one-ounce-a-day weight gain which we have happily exceeded! Maybe we won't have to be on Pediasure as long as we thought.

Tomorrow is the big upper GI test so, we'll see how it goes. NO surgery is the ultimate goal in my mind! I know I can't control it but I have done the g-button life and I don't want to go there again. Plus, I hate putting my kids under anesthesia. So, hopefully we can use medication for reflux without needing the fundoplication. The doctor said today that most likely if he is aspirating when he swallows, it can be fixed with a feeding specialist since he is already 17 months old and is dealing OK with it. We will see what tomorrow morning brings.

My hubby is home! No more single mom. Don't you just think it's cruel to leave me with 3 kids right off the bat! Just kidding. I mean, really, golf is important too. HA HA. Just teasing! I love you honey. But I am VERY glad you are home! Now, can you change that dirty diaper?

Saturday, June 7, 2008

The many steps of bathtime

Step 1: Fully dressed with NO water . Play for 2-3 minutes.

Step 2: Clothes off but diaper on, still NO water. Continue playtime.

Step 3: Diaper off, play a while. Then start the water. He usually freaks out as soon at it touches him, but today he did great!

Step 4: Wash body and hair while playing and singing. He whined but was still happy for the camera.

Step 5: Love on my little Max burrito!! He did amazing!!!!
WE DID IT!!!! I am SO happy he is trusting me now! I really just think he had no idea it was supposed to be fun. Now he is relaxing a little. We will continue the 5 step process for a while to help him feel more at ease. He is just so dang fun! Thanks to everyone for all the suggestions. I'm so happy to have others to ask!!!

Also, Max ate 2 meals by spoon yesterday!!! He is up to eating 8-10 oz of baby food at a time. It is awesome! Next battle will be texture. I plan to wait a few weeks for that. We have an upper GI study next Tuesday to see about his aspiration and reflux. I am so curious to see what is going on. He is still really raspy after every feeding and has a nasty cough even with the meds he is on now. My hope is that it is just reflux and not a structural issue when he swallows. Reflux can be fixed with medication. I'm not sure what they will do if it is structural.

Tia and Tyler are adjusting really well. Tia still needs her space now and then but there has been a lot of change for her to deal with. She has a new respite provider, we've had lots of company, Max's crying scares her, and daddy went out of town for a few days. She is still processing everything. Tyler is very easy going and change is not as difficult for him. So, he helps Tia by being a friend to play with. They are great kids!! Right now they are pretending to be in school. Tyler is writing his abc's and Tia is giving a lecture on manners! "You have to share Tyler, OK?" "OK" Pretty funny. I am almost surprised things are going so well. I am just trying not to feel spread too thin but give everyone some one on one time. It takes a lot of energy but it is worth it!