It's a MUST that I start this post off with the best videos of Mack EVER!
This video was taken on April 19. I started "tricking" Mackenzie into standing by holding the baby out, telling her to hold onto the baby's hands and stand up, and then I would slowly let go of the baby without Mackenzie realizing she was standing on her own.:) After a lot of repetition, she ended up standing on her own with the baby! It's quite obvious how frustrated Mackenzie gets when she falls at the end of this video. It's sad but it also shows her determination to learn how to master standing/walking.
And then, just 2 days later, Mackenzie stands up and WALKS!! Not taking just 1 or 2 steps but several steps! Words cannot explain how proud I felt and still feel each time I watch this.
I did not get the next part on video which is probably a good thing. Mackenzie turns around, stands up, and takes off probably taking at least 10-15 steps and runs right into the bin of toys. The result was a nice bruise/scrape near her eye and mouth. However, after a little bit of crying, she did get up and take some more steps. Plus, the bruise made her look tough!:)
Mackenzie watches the video of her walking and smiles and claps. If I ask her who is walking she will raise her hand and say "meeeeee!". Of course I took a video of that as well.:)
In the past week Mackenzie has stood up and taken one or two steps but nothing like she did in the video. She is very hesitant. My take on it is that she is being quite cautious because she knows the type of falls she has when she is standing up (even when she is leaning or cruising along side of the couch, etc). There are times where she will stand up for a few seconds and fall and then clap for herself and try it again. There are other times when she becomes quite frustrated when she falls and starts crying. I also wonder if Mackenzie becomes dizzy when she stands up. It is obvious that the OMA is causing difficulties with balance and others who have OMA or have older children with OMA state that there can be "dizzy spells". Mackenzie also gets off balance with her head thrusts so if she is standing while having head thrusts, I know it most likely will cause her to fall. But with all that being said, Mackenzie continues to make progress and she is standing on her feet so much whether it be on her own, when she is playing with her train table, or her favorite:)- when she is holding onto our hands and walking. She is doing very well holding onto just 1 hand and most of the time refuses to hold onto both of my hands.:)
Now onto what the next week holds for us.....
Mackenzie saw the neurologist on April 18th. Appointment went well. The neurologist stated what all of the other doctors and therapists have stated- that Mackenzie is making progress. He recommended going ahead with the genetic testing (CGH Microarray that I mentioned in the previous post). Mackenzie has an appointment this upcoming Wednesday with the geneticist. Since we just saw the geneticist last month, the appointment will consist of her giving blood (not fun for a 2 year old to have to have a large tube of blood taken!). He also recommended an MRI to be done on her brain which is scheduled for this upcoming Friday (May 4th). Mackenzie had an MRI last June when she was 15 months old. The results came back fine (from what they could tell since it can be hard reading a baby's MRI since the brain if far from being fully developed) but I am curious to see if there is any underdevelopment. Mackenzie will have to be given a general anesthesia due to being so young. Of course this makes me nervous however I do feel that we should do the MRI due to all that is going on with Mackenzie. I realize that if underdevelopment is found on the brain (most likely it would be near the cerebellum) that there isn't any "treatment" that can be done however it would give us more of an answer as to what's going on and rule out most of the more serious disorders/disabilities. The MRI may come back fine and we will be back to where we are now. The neurologist told me that sometimes no answers are better than getting answers. I do agree with that. I am ok with not ever knowing what is going on with Mackenzie as long as it means that she is healthy. However, I do have concerns as a parent with her development and the symptoms she has and I fully support the doctor's recommendation to do another MRI.
Please remember Mackenzie (along with me and BJ) in your prayers in the week ahead. I will update when we get the results back. I am pretty certain we are going to treat Mackenzie to something quite special next weekend due to putting her through so much this upcoming week plus we still owe her a huge reward for walking.:)
I will end by posting a picture of Mackenzie on Easter Sunday.:)
This video was taken on April 19. I started "tricking" Mackenzie into standing by holding the baby out, telling her to hold onto the baby's hands and stand up, and then I would slowly let go of the baby without Mackenzie realizing she was standing on her own.:) After a lot of repetition, she ended up standing on her own with the baby! It's quite obvious how frustrated Mackenzie gets when she falls at the end of this video. It's sad but it also shows her determination to learn how to master standing/walking.
And then, just 2 days later, Mackenzie stands up and WALKS!! Not taking just 1 or 2 steps but several steps! Words cannot explain how proud I felt and still feel each time I watch this.
I did not get the next part on video which is probably a good thing. Mackenzie turns around, stands up, and takes off probably taking at least 10-15 steps and runs right into the bin of toys. The result was a nice bruise/scrape near her eye and mouth. However, after a little bit of crying, she did get up and take some more steps. Plus, the bruise made her look tough!:)
Mackenzie watches the video of her walking and smiles and claps. If I ask her who is walking she will raise her hand and say "meeeeee!". Of course I took a video of that as well.:)
In the past week Mackenzie has stood up and taken one or two steps but nothing like she did in the video. She is very hesitant. My take on it is that she is being quite cautious because she knows the type of falls she has when she is standing up (even when she is leaning or cruising along side of the couch, etc). There are times where she will stand up for a few seconds and fall and then clap for herself and try it again. There are other times when she becomes quite frustrated when she falls and starts crying. I also wonder if Mackenzie becomes dizzy when she stands up. It is obvious that the OMA is causing difficulties with balance and others who have OMA or have older children with OMA state that there can be "dizzy spells". Mackenzie also gets off balance with her head thrusts so if she is standing while having head thrusts, I know it most likely will cause her to fall. But with all that being said, Mackenzie continues to make progress and she is standing on her feet so much whether it be on her own, when she is playing with her train table, or her favorite:)- when she is holding onto our hands and walking. She is doing very well holding onto just 1 hand and most of the time refuses to hold onto both of my hands.:)
Now onto what the next week holds for us.....
Mackenzie saw the neurologist on April 18th. Appointment went well. The neurologist stated what all of the other doctors and therapists have stated- that Mackenzie is making progress. He recommended going ahead with the genetic testing (CGH Microarray that I mentioned in the previous post). Mackenzie has an appointment this upcoming Wednesday with the geneticist. Since we just saw the geneticist last month, the appointment will consist of her giving blood (not fun for a 2 year old to have to have a large tube of blood taken!). He also recommended an MRI to be done on her brain which is scheduled for this upcoming Friday (May 4th). Mackenzie had an MRI last June when she was 15 months old. The results came back fine (from what they could tell since it can be hard reading a baby's MRI since the brain if far from being fully developed) but I am curious to see if there is any underdevelopment. Mackenzie will have to be given a general anesthesia due to being so young. Of course this makes me nervous however I do feel that we should do the MRI due to all that is going on with Mackenzie. I realize that if underdevelopment is found on the brain (most likely it would be near the cerebellum) that there isn't any "treatment" that can be done however it would give us more of an answer as to what's going on and rule out most of the more serious disorders/disabilities. The MRI may come back fine and we will be back to where we are now. The neurologist told me that sometimes no answers are better than getting answers. I do agree with that. I am ok with not ever knowing what is going on with Mackenzie as long as it means that she is healthy. However, I do have concerns as a parent with her development and the symptoms she has and I fully support the doctor's recommendation to do another MRI.
Please remember Mackenzie (along with me and BJ) in your prayers in the week ahead. I will update when we get the results back. I am pretty certain we are going to treat Mackenzie to something quite special next weekend due to putting her through so much this upcoming week plus we still owe her a huge reward for walking.:)
I will end by posting a picture of Mackenzie on Easter Sunday.:)
Can't tell you how proud I am of Mack! She is such an amazing girl and I always look forward to spending time with her. You and BJ are doing a wonderful job and I am blessed to have you all in my life. Prayers are going up for all of you this week!
ReplyDeleteI am so happy for the enormous progress Mack is making and it is impossible to convey to you and BJ the pride and love I have for both of you. You are the most courageous and loving parents I know. God be with the three of you in the coming week and as needed in tge future. Luv u!
ReplyDeleteHi my friend. I think a thing, you are one of the best mothers that I never find in the world. Listen, although sometimes I'm not connected to internet I'm thinking and praying when you ask for or when other families ask to for. You are really doing a very job and you are brave. Big hug from Barcelona with a lot of love (and sorry for my english).
ReplyDeleteThank you very much for all of your encouragement! I enjoy reading your blog. Please posts videos of your son whenever you get a chance. He reminds me so much of Mackenzie!
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