2 Different Subjects: Overview of Speech Assessment and Frustrations with Ocular Motor Apraxia

Getting another post in before the New Year...:)

Mackenzie had her speech assessment last week. It went very well. Mackenzie enjoyed having another therapist come into the home so she could entertain them (since I'm certain Mackenzie thinks that's the reason why the therapists come :)). The assessment consisted of the speech therapist asking me and BJ questions and also observing Mackenzie. We won't know the results of the assessment for a few weeks but the therapist feels that Mackenzie will benefit from speech therapy. She mentioned that Mackenzie will probably receive speech therapy twice a month. The therapist could tell that Mackenzie has difficulty forming words and will whine when she wants something. Mackenzie also gets frustrated when we don't understand what she wants. I do feel like it will be a matter of time before Mackenzie's vocabulary grows. Just in the past few days she has started saying a few new words. This morning she looked at my husband, smiled, and said "BJ!". BJ and I both questioned if we heard her right and after a few more times of Mackenzie saying "BJ", we knew she was actually saying his name. A few minutes later I pointed to BJ and asked Mackenzie "who is that?" and she smiled really big and said, "Da-eee" (her way of saying "Daddy").

The speech therapist also assessed Mackenzie's receptive language (what she understands such as commands, etc) and said that Mackenzie appears to be in the 27-30 month range. I must admit that it's so nice to hear that Mackenzie is 6-9 months ahead in a certain area when the focus is typically on the negative aspects of the disorder such as her mobility delay (and now possible speech delay). I have been told by many friends and family that Mackenzie is a very bright child however hearing it from a therapist really made me realize how great she is doing in that area. :)

Now to turn to a whole different subject. Last week was a very frustrating week. I guess we all have our times of questioning why things are the way they are and worrying about what is to come. As Mackenzie gets older, she is also starting to realize more. She is getting frustrated with not being able to do all that she wants to do (and what she sees other children her age doing) and is getting frustrated trying to tell me what she wants and I'm not able to understand her. At her last check-up the doctor said that it is good that Mackenzie shows frustration. But of course it does bother me to see her become frustrated over situations that I am also getting frustrated about. I have connected with another mother in the Facebook group whose son with OMA is a day younger than Mackenzie. It has been so helpful being able to relate to someone going through the same thing. One day last week when I was having a hard time, she called me stating she was frustrated with how her son is having so many balance issues and difficulty with walking. We both questioned if we were doing all that we should be doing for our children. She posted on the OMA's Facebook group about her frustration and it was amazing the response that was given. People were very open and honest about how they have had similar feelings and have worried about their child with OMA. OMA is such a rare disorder so there is a lot of worry that comes from the uncertainty of what the future holds plus the worry of watching your child have so much difficulty with things that come so easy to other children. Those who have an older child with OMA gave encouragement that even though their child went through a lot of ups and downs the first several years, that their child is doing quite well and doing things they never imagined they would be doing (such as riding bikes, jumping, skipping, running, excelling in school, etc). Someone mentioned how her child is determined and stubborn and even though it takes her child longer to do things, it makes her child push even harder and be even more determined. I feel that Mackenzie is already this way and will become even more determined as she gets older. I know it is going to be hard to see Mackenzie struggle in many areas (since I'm already witnessing that now) however it will make her push harder and when she does accomplish something, it will make that moment even more exciting.

I truly appreciate all of the encouragement that I (and my husband) receive from friends and family. Last week ended so much better than it started. I was frustrated at the beginning of the week, wondering why Mackenzie isn't walking when she is almost 2, wanting to know what struggles she will face, what the future holds, etc and even though I am still worrying, I'm not letting my frustration overcome me. My mom and sister reminded me to remain patient and of course reminded me that I have a very sweet and bright child. Close friends told us they are praying for Mackenzie, and I reminded myself that I truly am blessed with a wonderful daughter and a very supportive husband.

Here are a few pictures from the past week. Mackenzie continues to ride her bike throughout the house with minimal help. She now has a new buddy who has to join her wherever she goes!

She has to make sure she has her sunglasses with her at all times (even when it's dark outside:))

Mackenzie looks quite tall in this picture and of course quite cute. :)

My favorite picture... Mackenzie was watching "A Charlie Brown Christmas" with BJ and put her arm around him and kissed his cheek.

So once again- Merry Christmas and Happy New Year! I will be sure to post a few pictures from Christmas and hopefully one or two new videos. :)

Monthly Update :)

The Facebook group on Ocular Motor Apraxia has been quite helpful. I am continuously learning more from adults who have OMA and from parents whose children have OMA. It is interesting how some describe what it is like to have OMA. One person said that learning to walk with OMA is like learning to walk on a merry-go-round. I often wonder what it is like for Mackenzie. It is obvious that she has difficulty with her balance. Does she get dizzy when she tries to stand up and when I'm holding onto her hands walking with her? Is the reason she often runs into the wall when she is crawling because her depth perception is off? It will be interesting to ask her these questions when she gets older.

This past week I woke up and had the worst pain in my back. BJ dragged me to the doctor and I found out that I have a pinched nerve. After laying down for 2 days straight, I feel much better. The doctor said that it was most likely due to the lifting and carrying that I do with Mackenzie (since she is close to 30 lbs:)). From a selfish standpoint- this is a good reason why I look forward to Mackenzie walking.:)

Mackenzie is becoming quite independent. She pushes my hand away when I try to help her and will tell me "no". She is the most determined child! I do get nervous when she does things on her own since she still loses her balance and has hard falls however they are not as often as they used to be. Mackenzie learned how to pull up on the couch and turn herself around to where her back is leaning back on the couch while she is standing up. She loves watching TV in this position. Sadly, there are still times when she will randomly lose her balance and fall straight down on her side but she will let out a brief cry, turn herself around and get right back up. Here is a picture of her leaning up against the couch, as proud as can be!

She has also learned how to get on and off her bike and scoot throughout the house. This is a huge improvement from just a month ago when she would need a lot of help getting on and off and would lose her balance and fall off of the bike if I wasn't there holding her up. I love how proud she is of herself!

 

Here is a video from a couple of days ago when Mackenzie decided to show us her  new way of getting around. She is determined to walk! The physical therapist told us that a child typically does this around 11 months old. Three months ago the developmental pediatrician told us that Mackenzie was at a 9 month old's development when it came to mobility. I am very thrilled that she has made this much progress in just 3 months!:)

Long video however it shows how well she is doing with riding her bike.:)

 

 

Mackenzie has a speech assessment this Thursday. She was referred by the occupational therapist. Mackenzie says some words however the OT feels that Mackenzie may be a little behind the "average" with her speech. 

We go to UVA on Janurary 10th to see a Neuro-Opthamologist. Mackenzie went to the doctor a couple of weeks ago for an ear infection and saw a different pediatrician (than her primary pediatrician) who was very interested in Mackenzie's OMA. The doctor gave good insight and advice on what route we should take and referred us to a Pediatric Neurologist at UVA. We don't have a date set for that appointment. I'm looking forward to Mackenzie seeing both a Neuro-Opthamologist and a Neurologist so we can hopefully gain more insight as to what exactly is going on. 

Hopefully my next post will be filled with all new information that we get from her upcoming appointment with the Neuro-Opthamologist! :)

~Merry Christmas and Happy New Year!~