Sunday, August 31, 2008

Weekly Update -- 25 - 31 August 2008

Yay, I'm 86 weeks old today!

Here's a video of Masinja doing his 'thing'! He's gotten so vocal lately, that we're having trouble getting into the conversation. Of course, he wouldn't talk that much for this video. That is, until after we shut off the camera, and he talked non-stop for 20 minutes...

Enjoy!



That's all for this week.

Peace,
T.M.

Thursday, August 28, 2008

Weekly Update -- 18 - 24 August 2008

Yay, I'm 85 weeks old today!

Masinja had a very eventful week. On Monday he had a feeding evaluation done by an Occupational Therapist and a Speech Therapist, who is also a feeding specialist. We had gotten a referral, because we were having trouble transitioning him to table food and to a sippy cup. We found out that there is actually a food continuum and that we had skipped a level completely!! I don't know about anyone else, but I figured since the baby foods are labled stage 1, stage 2 and stage 3, that you just go from one stage to the next. Well, that is not the case. Before you move on to stage 3, you're supposed to introduce things like carrot sticks and celery stalks and pretzels and such. These things are not intended for consumption, but are meant to teach the baby how to chew and to increase the gag reflex. Well, needless to say, we're having to backtrack with Masinja now. The OT and ST both said that we are feeding him what we should be feeding him though.

The week before his evaluation I was actually successful in getting him to eat the gerber graduates meat sticks and cut up veggies and fruit. He still isn't exactly chewing them though. He has a high palate due to being intubated for so long. He basically just puts whatever we give him in the indentation and then smushes it with his tongue.

We also pretty much got him transitioned to a sippy cup the day before the evalution too. T.M. forgot to put the rubber stopper in the sippy cup Sunday and Masinja chugged his juice! From that point on he was pretty much ok with the sippy cup with and without the rubber stopper. Some mornings he still gets a bottle, but we're working on that.

The most exciting news from this week though is that Masinja started walking on his own!! T.M. and I were sitting in the living room watching TV and Masinja just pulled himself up to the coffee table and proceeded to start walking. We were so excited!! He is still pretty wobbly but I'm sure he will get better as he gets more confident. His physical therapist was so happy to see him walking on Friday. She just said, "Masinja, I have been waiting for this!"

Our next goal is to get him to stand up without having to pull himself up on a piece of furniture. His therapist was so impressed with his progress that she said he can go back to a biweekly schedule. She is hoping that by the time we go back in 2 weeks he will be standing up on his own and then he can be released. We will take some video of him walking and post it next week.

That's all for now.

Peace,
T.M.M.

Wednesday, August 13, 2008

Weekly Update -- 11 - 17 August 2008

Yay, I'm 84 weeks old today!

Masinja had a follow up appointment with the neurologist this week. He now weighs 25 pounds and he is still measuring 31 inches long. He had to have his phenobarb levels checked to make sure his dose is correct. He did pretty well considering the phlebotomist ended up having to stick him in both arms because the vein in the first arm rolled!! He got to sit in T.M.'s lap instead of having to be pinned down though so that helped a lot.

On another note, we got the results of Masinja's rapid MRI this week. According to his neurosurgeon here, he no longer fits the criteria for hydrocephalus. The ventricles in his brain are still slightly enlarged though. He also has some fluid between his skull and his forehead but that should go away as he gets bigger. He has to go back in 6 months to have another rapid MRI to see if there have been any changes. If everything is still the same, then Masinja will be released from the neurosurgeon. If his ventricles have gotten bigger though then he is eligable for an alternative procedure to drain the excess fluid. That means he won't have to have a shunt!!

Masinja has a feeding evaluation next week because we are having trouble transitioning him to table food and to a sippy cup. We'll let you know how that goes.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 4 - 10 August 2008

Yay, I'm 83 weeks old today!

Masinja did a great job at PT this week. He took more unassisted steps than T.M. and I have ever seen him walk. His theraptist was pretty impressed too. He pretty much performed for us also. T.M. and I were telling her all the words that Masinja is saying now and each time we said a word he would repeat it. His vocabulary now includes: Mama, which he uses both to address me and whenever he wants something, probably because he knows Mama will give it to him; Daddy, which sounds more like Gaggy sometimes; Doggie, which he says whenever he sees or hears the dogs; baker's man, he obviously loves playing Patty Cake; and last but not least, hockey, which we think stems from the fact that he loves to watch T.M. play hockey on the play station.

Masinja also walked up stairs for the first time this week. We often have to take him downstairs to the undercroft and let him walk around during church because he gets restless. I usually let him walk back to the staircase and then pick him up and carry him back to the chapel. This Sunday he decided he wanted to walk instead! I let him walk to the base of the stairs and was about to let go of his hands and pick him when he picked up his right leg and placed in on the bottom stair and began to push. He walked up the entire flight of stairs except for the last 6 steps. I was so proud of him. I told T.M. when we got back to our pew. It was T.M.'s turn to take Masinja downstairs about 15 minutes later and when they came back Masinja walked up the entire flight of stairs again!! He is certainly making progress. It will be interesting to see what he does at PT next week.

Masinja has a followup appointment with the neurologist next week. We'll let you know how it turns out.

That's all for now.

Peace,
T.M.M.

Weekly Update -- 28 July - 3 August 2008

Yay, I'm 82 weeks old today!

Masinja has had a pretty eventful week. We took a roadtrip to Ohio to visit family and we have had a great time. Masinja went to the zoo for the first time this week. We went to the Columbus Zoo on Friday and it was absolutely HUGE!! He got to see all sorts of animals and he got to spend time with his Uncle Gary, his cousins Taylor and Jordan, and his Godparents Tom and Leslie.

We went to a giganitc mall and an Irish Festival on Saturday which was pretty neat. Masinja also got to spend time with his Uncle Sean and his Aunt Joyce that day. Everyone was surprised with how big he was because the last time they saw him was last October. His Uncle Gary kept calling him Hulk-a-Baby because he has gotten so big :O)

We also had a family picture taken on Sunday and Masinja was a complete ham!! It took the poor photographer at least 8 tries to get a good shot of all 8 of us because Mason wouldn't cooperate and look at the camera. She told the rest of us to look at the camera while she would do whatever was necessary to get Mason to smile and look at the camera at the same time. The reason it took so many shots is because the rest of us were watching him to see what he would do :O) We finally got a good shot though and she took some other pictures as well. One of the pictures that she took of Mason is absolutely priceless!! He looks like an angel.

Pic

We are heading back to Nebraska in a few days and we only hope he is as content on the ride back as he was on the way here!

That's all for now.

Peace,
T.M.M.

Weekly Update -- 21 - 27 July 2008

Yay, I'm 81 weeks old today!

Masinja worked pretty hard at PT this week. He wants to walk so badly that he tries to get as far as he can as fast as he can. The problem is he still doesn't quite have enough balance. He ends up doing face plants more often than not! This week his therapist put weights around his legs in an attempt to force him to slow down and focus on his balance. It worked really well while he had the weights on, although he did get kind of tired because he walked from the clinic out to the lobby of the hospital and back again. His therapist said that he would most likely revert back to his old ways as soon as we took the weights off, and sure enough, that is exactly what he did :O) He isn't quite confident enough to walk on his own yet either. About the only way he will walk is if he is holding someone's hands. Actually he likes to hold your index fingers and he squeezes so hard that they turn purple!! We are trying to get him to hold only one hand and most of the time he will relinquish one hand quite readily but some days he just doesn't want to cooperate.

Next week we will be going on a road trip to Ohio. We are going to visit Masinja's Uncle Gary, cousins Taylor and Jordan, Uncle Sean and Aunt Joyce. We are also going to see one of Masinja's three sets of Godparents. When we went on a roadtrip last year he was pretty content so let's just hope he is just as content this time!!

That's all for now.

Peace,
T.M.M.