I’m so glad I have my phone to document things we do around here, otherwise I would be lost and would have forgotten everything.
This is the easiest way, by far, to update.
Mayah-Mayah still rocks herself to sleep each night. Dan and I go in and touch her arm and quietly whisper things are going to be alright. Sometimes she even sees us walk in her room (in the dark) and stops before we make it to her bed. We think it’s the being alone part that really does it for her. When she did her sleep study, she didn’t rock, when she had her first sleepover at Nana’s she did not rock.
Yesterday we learned Mayah is far more delayed than we ever realized. We have to absolutely start at square one with her. Yesterday David, Mayah and I sat at the table to string beads. David amused himself and worked on hand-eye coordination by simply stringing. Mayah and I worked out counting to 4 and colors. Green, yellow, pink and purple. From playing with Alexander’s little computer she has memorized how to count if you get her started she can go up to 10 or close. Probably more like 9. BUT if you’re counting actual objects, she has absolutely no idea what the numbers are for. We will keep working. Suggestions are welcomed. As for colors: no matter how long we sat there, she was not retaining anything. She guesses. We continued to move the colored piles so they wouldn’t be in the same order to rule out memorization. She would pout. She would stare mindlessly. 1 of 2 things is obvious: in the internat where she was they either a) taught them nothing and just made it “look” like they were having school. b) Mayah wasn’t able to grasp anything anyway so they just wrote her off and she could get away with pouting and staring for them to leave her alone. Either way-neither of the above mentioned ways will work around here.
My MIL came over yesterday to pick up David for a sleepover, and she sat down with Mayah as well. It was nice to have her see what I was seeing. By last night-when Dan came home, Mayah still took a long time-but was able to get a few colors right a few of the times. Still, an improvement from the afternoon. We’ll see how she does today and if she was able to retain anything.
Dan and I also realized the possibility that Mayah may never retain anything. After all, in Ukraine her medical report said she had scoliosis. She has the best psture I’ve ever seen (think ballerina style posture) and she may have some severe delays that no one cared to mention. Time will tell. We also need to accept she may never be verbal. Yes, she has learned quite a bit of language since being home. She still things she is actually speaking when her lips are moving. She doesn’t even have to make a sound-she’ll just move her lips. She could be just trying to be silly, she could think she is actually communicating. Just something else we are working on as things progress. I have noticed though, this past week-her language making quite a move in the right direction. Go Mayah!
Alexander-is enjoying school. Though I am noticing some behavioral issues with him. Some could be because of being in school and different behaviors he learns on the bus with the older kids on the way home-but I’m thinking more along the lines of him wanting our attention. Sadly he has fallen into he’s –the-good-kid-who-can-do-things-on-his-own and thus has received less attention from us. Something I’m going to be working on today and up keeping so he knows he is just as loved as his baby brother, new sister and little brother. Words of affirmation have always been Alexander’s Love Language. I try to reaffirm his awesomeness as often as I can. Please pray for his sweet heart. I long for the days of summer and next school year when I no longer have to share him with the school system. I think even he is starting to look forward to it as well. Though I’m sure he’ll miss seeing his new friends regularly-he will be involved in sports and church activities for him to “socialize” (shudder at the word!) ha-ha
David-is improving practically daily. He is trying new vegetables all the time. Whether he likes them or not is another story…but the fact is he trying and not vomiting is huge! He is learning to ask for fruits as snacks-and I’ve heard him ask on numerous occasions “is this good for me?” He is beginning to take a proactive role in what is important for his body. He takes his iron daily like a champ. As long as there are other grown ups watching. If Daddy or someone else other than me are home with him while he’s taking it, he whips out the drama. His sleeping is also improving without Melatonin! Last night, he had a sleep over at Nana’s and she sent me a pic of him sound asleep at 8:15. Not bad for being at a special place where bedtimes fall to the wayside. *wink I called the neuro’s office yesterday for his MRI results. The nurse said they were in and she was waiting for the Dr. to read them and she would return my call. I didn’t hear from them yesterday, I’ll give them a call if I don’t have word by lunchtime. Next Thursday David has his EEG at Children’s then he’s done unless his EEG is normal or inconclusive. If that is the case, he will need the 23 hour EEG. Guess we’ll have more information on that in 2 weeks or so.
Gage-oh that child of mine! If there’s trouble to get into, he’s already tried it. Slowly, ever so slowly he is getting better. I can’t believe he turns 2 in just a few weeks. Where does the time go? In starting to learn colors with Mayah yesterday-we learned Gage knows them. He kept trying to tell her the answers. I think he just longs to do what the big kids do on their own. Yesterday he tried getting his own water from the fridge-this getting the lever pulled out but unable to push it back in getting water all over the floor. He is constantly trying to get into the bathroom to brush his teeth. I remember all of the other boys trying the same things-it won’t last forever. I do love his special cuddle times though. AND when we all sit together to make food he follows directions quite well. I’m rather impressed he’s listening and not trying to destroy something.
I have plenty more to update-I need to go back and add the pics. The kids are all still sleeping so I was able to actually get some real words here!!
We love being on the receiving end of the prayers-and equally enjoy praying for so many of you. Thank you for joining us on this journey.
**okay so I never added the pics** I will try tonight;)