Thank God for these Women

We are still here! It has indeed been a long time since our last post, but we have been so tired around here. Sweet B has had a few new things going on in her life, and I can't wait to share them with you. I'm going to tell you about what we spend a lot of our time doing, which is Feeding Therapy, Physical Therapy, and Infant Education. The other stuff will have to wait!

Feeding
We have been waiting a long time to get a qualified feeding therapist for Sweet B. We had one for several months, however she did nothing for any of us and really missed out on a crucial time for B. The regional center, who provides services for babies who are behind, set us up with an amazing feeding therapist. She is an occupational therapist, and it is very apparent that she is more than qualified and has a true gift for getting kids to eat. The neat thing about our OT is that Sweet B's teacher, A, is actually very good friends with her and managed to set us up. Her name is S, and I know that she is going to make a huge difference for Sweet B. I don't know how long we will have her, due to insurance issues, but I know that she is going to bless our lives. She is the perfect mixture of sweet yet firm. We've only had two sessions with her so far, and I've already seen improvement. She is having us add a teaspoon of ground flax seed to her food, and we will increase the amount of flax as she improves, which will eventually lead us to real whole food.  She has us doing ora.l stim.ulation with a vibrating toothbrush before and during the feed.

Today was the first day that Sweet B did not stick her tongue to the roof of her mouth during her feed, and that is HUGE. We are trying to teach her how to form the food into a bolus (a ball of food I believe) and swallow it appropriately. Right now she takes the food into her mouth but then doesn't know what to do. So we stimulate her mouth with the brush which prompts her to move her mouth muscles. There are also other techniques which we use, which I won't go into now.

She has also introduced us to a brushing protocol, which is for B's sensory issues, which hugely impact her in every way, from eating to not wanting to put her hands or feet on the floor. This impacts her with shifting her weight while sitting and her not wanting to crawl. Anyway, we take a special brush and brush her body and do joint compressions on her every two hours during awake time. Yes, it is tiresome and we have had a few days where we have not done well, but we have faith that this will help her immensely, and I have spoken to other parents who have been successful.


Physical Therapy
I wish I could say that we are making great strides in this area. Sweet B's therapist, A, is also amazing and I look forward to seeing her every week. Sweet B is very, very stubborn and refuses to do tummy time, which is hampering her ability to crawl. We believe that she is completely capable of crawling, but has no desire to at this point. Why would she when she can lay back and enjoy, right?! I have become much more strict in this area and I strap her to her reflux wedge mostly every day and force her to do thirty minutes of tummy time. She can't roll over in this thing, and we look in the mirror and babble back and forth at each other for entertainment.

Our three-legged poodle is obsessed with playing catch, and is constantly bringing Sweet B a ball to throw. This is the only way that B will stay sitting for long periods and actually shifts her weight quite a bit during this playtime with the dog. It's funny...When we got our three-legged poodle I had wanted to certify her to be a therapy dog, like my other dog, but she is a bit too crazy and hyper. Little did I know that she would actually end up being a therapy dog, but for my child.

I tell myself that Sweet B will walk and dance but she just needs time. It's all in Sweet B's time. That's what we are constantly saying. It is frustrating and I desperately wish that I could make her crawl, but I can't, and she will when she is ready. We see her developmental doctor in a few weeks and I am terrified. I don't want her to give Sweet B the label of Cerebral Palsy. I know that we would receive even more services if she did, but I don't want her to have it. If she has it, I will accept it and embrace it, even though it will be hard. However, I truly believe that she has to just grow into herself, feel comfortable enough to roll around and touch the floor, and have confidence in herself. She has been through hell. It's no wonder that it is taking her a long time for everything. (By the way...the doctor didn't even bring up CP last time. I did, and she said we would discuss it if B had not improved by the time she saw her again. And I can tell you that she has already improved a lot since then.)

Her physical therapist is trying to get Sweet B approved to come twice a week. She is helping us tremendously and I believe that she will continue to help Sweet B move her body and get comfortable with herself. Her gross motor skills are what worry me the most out of everything. I know she will eventually eat, but I don't know if she will eventually dance or even walk. Everyone tells me that she will, and even if she has Cerebral Palsy it is most likely mild. Having our wonderful and supportive PT helps this difficult process so much more. If I had to see someone weekly who was not supportive, or mean, or pessimistic, I wouldn't be able to handle it. She is like a ray of light and she treats B like a very special baby. Even the center where we bring B for the physical therapy is fantastic. I have been to a few places that make me even more stressed out, but when I walk in this place, I feel a weight being lifted off of my shoulders.

Now, these next pictures are quite possibly the most pathetic pictures I've seen. Doesn't she look like she is being tortured at physical therapy? Please! They treat her like a queen!

Infant Ed
Sweet B's amazing teacher has taken another job *sniff sniff*. We were so sad to see her go but we continue to be in touch with her. In a card that I wrote her, I told her that I don't know who she has helped more, me or Sweet B. She continually told me that Sweet B is smart, and she made me believe it. When she came to our home every week I so looked forward to seeing what she could help Sweet B accomplish that day. I see things in B that I wouldn't have seen without this wonderful woman.

She also taught me how to "play" with Sweet B. Now, I do have my Bachelor of Arts in Child Development, and my Multiple Subject Teaching Credential, but I taught 3rd, 4th, and 6th graders for ten years, and hadn't worked with infants or toddlers since college. I feel like I don't know a thing about infants! Also, I spend so much time feeding B and working on her gross motor skills, that I had not been taking the time to really get down and dirty and play. Her teacher taught me how to teach her cause and effect and what toys to buy and how to make a sensory bin, fill it with rice, and hide creatures in the rice and have her find them. *Side note: I should have paid more attention during my infant development classes.

Her teacher really liked to work on B's sensory issues, and so on her last day, broke out the whipped cream and food coloring, and let B have at it. (Sweet B "having at it" was more like her putting just her fingertips in the whipped cream and then quickly pulling them out, but hey, it's progress!)

Fortunately we were set up with another wonderful teacher, who Sweet B really likes. I am very confident that Sweet B will continue to learn so much from her new teacher, as will I. We've only had one session with her so far, but I could immediately tell that this woman has a true gift for working with babies and their parents. We really really like her.


We are so incredibly blessed to have these wonderful women working with B. As a teacher, it always bewildered me when I had a parent who acted like I was the enemy. I cared for every child deeply, and I promised myself that I would never disrespect any teacher (or PT or OT) who worked with my child. I intend to keep that promise, but I must say that I haven't had to encounter that at all, and I feel like God hand-picked these women specifically for me and Sweet B. They make this difficult road easier to travel. They lift me up. I am so thankful that God placed them in our life.

Now that Sweet B and I are about to go into hibernation mode, I will hopefully have time to update more. Goodnight. I've got to hit the sack because I have to get up in a few hours to brush my child (words I never thought I'd say :)