Makenna is officially 18 months old! I cannot believe it has already been a year and a half since she made her crazy entrance into the world! The last year and a half has been filled with so many ups and downs. However, with all the craziness I can honestly say we are finally to the point now where we have more great moments than scary ones! Finally at 18 months hospital visits and trips to Gainesville are no longer a monthly (or bi-monthly) occurrence. She also no longer needs to go to the pediatrician every week (now she goes once a month for her synagis shot and about once or twice a month for a check up or follow up of some sort). She still gets PT, OT, Speech/feeding therapy for an hour each week though, so we stay little busy with those types of appointments.
For the last 18 months Makenna, Rex, and I have worked so hard to fight delays caused by the brain atrophy from ECMO/hydrocephalus and the extended NICU stay. Many times a day we go into her school room and practice her gross motor, fine motor, and speech skills. In the last two months I have really seen our efforts start to pay off. She is more vocal and really enjoys playing with her educational toys. I don't think she misses light up, plastic, talking toys at all. She seems perfectly content with her simple wooden toys that require manual manipulation! I am definitely loving the impact that the Montessori method has had on her learning the last few months!!
Gross motor skills have always been her largest hurdle; however, the last two months she has definitely made great strides. She has started attempting to pull to a tall kneel every so often. It is very difficult for her and she is only occasionally successful, but she definitely has the desire to reach higher surfaces! She also rolled from tummy to back for the first time this month and has really improved at standing up (while holding on). She no longer needs to lean her body against the surface and she will let go with one hand to reach and play. She has even begun to lift up her foot and has taken a few side steps on her own while standing. Also, if we hold her up under her arms she will take steps and walk across the room. I really think cruising is in her near future!
One exciting fine motor skill she has learned the last two month is drawing! She loves using her crayons, markers, and magna doodle to scribble her art! She also learned to identify some body parts. She can find nose, eyes, hair, belly, mouth, and feet on herself and others. She will put things in buckets, turn pages in books, throw balls, and roll cars around. She still refuses to build with blocks or do puzzles, she will do them occasionally, but the concept just doesn't really make sense to her yet. This month I also used ball pit balls to help her get over her fear of the bathtub. She played in them for a couple months, until I finally added some water and removed some balls. I kept adding more water and removing more balls. Now she will finally take baths without the balls in the tub!
Feeding has been our major focus over the last few months. She is getting a little bit better with spoons (still prefers her hands); however, she adamantly refuses to drink from a cup of any type because when she does she tends to choke. We attempted to do a swallow study to determine if she is aspirating. During the swallow study she sat in front of an X-ray machine and was supposed to drink different thicknesses of liquids. Unfortunately she refused to put any liquid in her mouth (not surprising since she always refuses) and they couldn't get any useable information for us. At this point despite our every effort, and the efforts of her speech therapist and Occupational therapist, she only nurses for fluid. She will burst into tears if she sees a cup or start kicking and pushing the cup away. She also refuses to eat most fruits and veggies because of sensory/texture issues, so we are working through that as well. In general I just keep preparing well-rounded meals for her and have come to the realization that unless it is meat, bread, rice, or quinoa it will probably end up in the trash.
Her speech the last two months has really exploded! She can say roughly 30 words and enjoys singing too. She can sing Amazing grace and Let it Go. She is more aware of her daddy leaving for work and is more interactive during FaceTime calls. She also follows simple commands such as "get the ball" "come her" and "put that in your mouth." We have decided not to use the word "no" with her, so she also has learned what "hands off" means and is pretty good at following directions. I can tell she usually understands what we are saying. She can say the animal sounds for duck, dog, and cat and she can say the words --- up, go, more, mine, dada, mama, mom mom, papa, walk, bye, hi, apple, bottle, nurse, cracker, duck, no, eye, night night, bow, owl, bird, stop, why, bubble, Olaf, and rice (might be forgetting some).
Not much has changed medically over the last two months. She still wakes up and wants to nurse constantly throughout the night. We switched her to a more powerful reflux medicine and that seem to be helping a little since she no longer wakes up crying, but she still wakes up. Neurology has prescribed light therapy to help with sleep. , We began sitting her in front of a special light box for 30 minutes each morning. We are starting that yesterday, so no idea if it will help! Finally the last change this month is that we need to switch to a new OT/Speech clinic. Ours is no longer covered by Early Steps and is out of network for our insurance. Unfortunately the only other option in our area is 30 minutes away and doesn't provide in home therapy, which means exposing her to the germs of a clinic environment and spending a lot of time in the car. I'm in the process of fighting to get our insurance to do a reconsideration and consider her current therapy in network so she can stay put and continue getting therapy in house! Hopefully it will work! Finally she had an ophthalmologist appointment this month and they confirmed her eyes are still doing well. Her prescription hasn't changed and the fluid from hydrocephalus appears not to be putting pressure on her eye muscles! Yay!
Overall the last two months have been rewarding, exciting, and exhausting. We are so grateful to have this wonderful little blessing in our lives. It amazes me how far she has come and how much our lives have changed in the last year and a half. I hear so often that people don't know how I do it, don't see how I am able to stay so positive or how I keep from going crazy being home so much...but it is simple. I do it for Makenna. I do it because I love her and I know what it feels like to almost loose her. I do it because I want her to have the best life possible and the brightest future imaginable. I don't want anyone to ever have any reason to put limitations on her or to ever tell her she "can't" do something that she wants to do. I don't want to look back in a few years and have regrets. I want to know that in these important formative years that we did everything in our power to help her succeed. I want to know that we gave her all the help, time, and resources she needed to reach her full potential. I am proud of Makenna, Rex, and myself for all that we've accomplished together as a family. Now that we have 18 months down, I can't wait to see what the next 18 years have in store for us!
