To the Lady in the Check Out Line

Dear Lady in the Check Out Line-

I know you have no idea who I am or who my child is. I know you have no idea where we come from or where we are going. I know you have no idea what has happened in our lives over the past 8 months. Yes, My child is screaming right now. Yes, she is uncontrollably hollering and stiff. Yes, she is upset and there is not a thing I can do but pay and pray it will stop.
I saw your eyes when I fought for 10 minutes to get her out of her stroller because her legs were so stiff and she was so upset. I saw you talking to your friend and can only imagine what you were saying. See I understand that to you it seems as though I have a spoiled child and have no control. Well the no control is correct, but spoiled is wrong. Maelee has sensory integration problems and there is nothing I can do to help. Just 5 minutes before a total stranger came up to her and rubbed her legs...something that should not have happened. It sent her into an out of control fit. You look at my beautiful daughter and see nothing wrong, you look at my child and see a healthy 8 1/2 month old. But you don't understand the special needs she is suffering from.
The unknowns we don't have answers for, the hypertonia that affects her on a daily basis, the overstimulation, the sensory sensitivity that strikes her in a second. To you my child is healthy but to me she is not. Please do not judge me, do not judge my parenting. Please do not look at me like I am a terrible person for letting her cry, or that I am a bad Mom because I can't stop her crying. Maelee came into the world too soon and her little nervous system sometimes just needs to cry it out. FYI it took 30 minutes to calm her down, a nap, and a yoga ball.
I pray you will have compassion and understanding from now on but I know better. You see when people hear my child is in therapy they question me, when they hear she has special needs they do not understand, so I don't expect a stranger to get it. I will just keep doing my best to provide for Maelee in every way I know how. I will keep doing what I have been taught and what my heart tells me is right.
Remember the next time you are standing in line and a child cries....those tears may have a very different meaning than you think. Sometimes the tears we cry are filled with much more meaning than one could ever imagine.

Sincerely,
The Mother who Cried Tears of Hurt After Meeting You

Bouncing Baby! :)

Taking Maelee to physical therapy (PT) can be exhausting but exciting at the same time.  I was so happy that my Dad and Lee were able to join us yesterday for her weekly session. Since Maelee has begun PT I have had to fill in what happens and what is next to Lee....and sometimes I can't remember everything that happens. I know it seems much can't happen in an hour but I promise a lot happens in that tiny span of time.
This week Maelee continues to make strides! She is doing so well. Over the past few weeks she has started "crawling". Let me describe this for anyone who has not seen her....she is not able to put her knees underneath her for any extended amount of time so she looks kinda like a little frog! :) She is doing great and getting places, sometimes a little too quick for me. Emily (her PT) said that we will keep working with her to pull those legs under but this is all related to her hypertonia. She is not able to pull her legs under without her tone kicking in and making her legs go out. Some days she does really good and then there are days when she is really stiff and she just drags her legs around behind her....either way we are so proud of her!
We have decided to hold off on bracing her feet until her muscle strength is stronger. We talked about this with her PT and decided that if we braced now she might become dependent on them.....something I would hate to do prematurely if not needed. Bracing will help hold her feet down and give her good form, but until her strength is better we will hold off.
Emily has begun doing deep pressure massages on her feet and that has helped. Maelee not only has hypertonia but also has a sensory integration concern. We are not sure exactly what this will turn into or not into. She curls her toes a lot and sometimes it is difficult to put shoes, socks, or when you touch her feet she gets very upset. So her standing concern is not only related to hypertonia but a sensory problem. Now the question: Is what is causing the hypertonia causing the sensory problem? or Is the sensory problem making her kick in her muscle tone? We don't know and we are not sure if we will ever know.

With Maelee's sensory concern comes her love for bouncing. I have been explaining this to Lee over the past month...and until yesterday he really did not understand. Maelee has always loved to jump but there is something different about her when you bounce her on an exercise ball. Yesterday she was overstimulated and would not stop crying during therapy (something that does happen every so often) and Emily did exactly what she always does; She got the exercise ball out, sat Maelee on it while she was still crying, and began to bounce her gently. Within seconds she stopped crying, was calm, and peaceful. Her muscle tone decreased and she relaxed. It was amazing!! Lee got to see what I was talking about. She loves the vestibular input this gives her and finds it soothing. Throughout her therapy session anytime she gets upset, extra stiff, or just beside herself- the ball is used and it works great! We bought a ball yesterday......where has this thing been for the past 8 months!!!!
Maelee has her overstimulation moments. Something many will not understand; It's not always filled with crying, sometimes just stiffness, and other times a little of both. Today she was on the verge of THAT moment......I got the ball out and within seconds she was peaceful, relaxed, and at rest. Her muscle tone started to decrease and I was able to move her again. At the beginning of the week she had a bad day, I can say this and know that we tried to make the day better. She was so tight we couldn't get her in the highchair, it took me 20 minutes to get her pajamas on, and then changing her diaper was a whole other challenge. I wonder what would have happened if we had placed her on the ball for 5 minutes during the day.....would her day have been better!? We will never know about that day but we can see what happens from now on.
Maelee will continue her PT once a week on Fridays and OT on Mondays! During OT she will work on her fine motor skills and more sensory focused activities! We are so thankful for the therapists in her life who we know love and adore her! We do not have an answer and that drives us crazy at times......but until then or if ever we will continue to do our best for Maelee! We will love her with everything we have, fight for the best care, and never give up on getting her all she needs! She has always been a fighter and we will do the same for her! She is our miracle! We do love our sweet peanut! :)

EEG results.....Now to Watch, Wait, and See.....

Maelee was seen by the neurologist on April 13th. We were so worried about this appointment but also knew we wouldn't leave with any answers that day. The neurologist had the same concerns regarding her muscle tone as us and wanted to do a follow up appointment after a few months of therapy to see how she was progressing. He threw out some things that it could be...of course making me a nervous wreck even more. I knew that she may be diagnosed with something but I just didn't want to hear it come out of his mouth, not now or ever.
We were scheduled for an EEG on April 23rd. Maelee was set and ready to go. I knew that it was going to be a long day but I never could have imagined how long this day would be. Maelee did not handle being hooked up to the probes well at all- she cried so hard we had to stop and make sure she could breath. It was so sad and broke my heart. I felt terrible. Were we doing something wrong? Should we stop? Is this necessary? Lee reminded me that her doctor wanted to rule out seizures or abnormal brain activity, he wanted to make sure nothing was going on right now, and that something was not right since Maelee can not put her feet down. I knew in my heart we were doing it for the right reason but it didn't change that my heart was breaking over and over. And she just looked so upset.....

But once our sweet peanut was hooked up she was happy as can be!! We fed her a bottle, played with her, rocked her, then put her in the stroller and she slept for the next 45 minutes! The test was over! Now to wait.
We had to wait a week for the results.....a long week!! But it was worth the wait! On Friday, April 27th we got the best phone call, her EEG came back NORMAL!!! Wonderful news! But now we didn't know what to do......or what was next.....

Maelee will continue doing PT once a week. She is making great strides and we can't wait to see her progress even more. Over the next few weeks her therapist will watch her legs and decide when the right time to have her fitted for little braces for her feet/legs to help her improve even more.
Maelee began OT (occupational therapy) on Monday April 30th! We were so excited to be able to begin this part of her journey as well! Maelee has some work to do on her fine motor skills that her neurologist was concerned about. She has never been able to shake a rattle prior to OT- until yesterday! She shook it in the right hand for me and I cried! She still can't do things equally with her left hand, but we understand this and are working to get her on the right path. Maelee also has some sensory sensitivity.  This may sound scary or confusing. But what it means is some noises, certain things that touch her, or too much activity can cause overstimulation or her to have what most would call a "melt down". But for Maelee it's a "melt down" that we can't stop or control. She has been really good with trying new things. I have worked really hard at laying out all types of fabrics for her to touch, making all different noises, and taking her places with different things going on....but I know when enough is enough. I can look at Maelee and see when she is on the verge of too much and am thankful that I know her so well. She has a harder time with touching on her left side or on her legs, but we are trying. OT is working with her on swinging, something most babies find soothing...but Maelee would rather jump! :) She is our little frog!

We know that in a few months we may not have an answer still but we hope and pray that wonderful progress continues to be made. We know that eventually there might be a diagnosis, and we have been made fully aware of what those options will more than likely be. Maelee may have a label for the rest of her life....but that label will not define her. She will define herself. She is a fighter, survivor, miracle, and a true gift from God! :)