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Update

15 Mar

 

I think an update is long overdue. Somehow, the hours of the day always seem to get away from me, and even though I’ve been meaning to post, the words just keep piling up in my head and never quite make it to the computer. Thanks for being so forgiving!

Jenna celebrated her birthday and now proudly tells anyone she can that she’s FIVE! It’s amazing what a difference one number can make. When she learned her dentist appointment was approaching (routine exam & cleaning), she started crying and whining but then caught herself. She took a deep breath and said softly to herself, “I’m five now. I can do this.” and she DID! With no crying or freaking out. I was so proud of her.

She’s now 44″ tall and weighs in at 43 pounds. She’s right smack on the “average” line on growth charts now. Quite an improvement from not even being on the curve! The blenderized formula is going phenomenally well, and we will soon transition to including her overnight feeding in this switch. At that point, all of her feeding will be with homemade formula. Yay! My main hurdle for this is step is finding a way to keep the calorie count up, but make the formula thin enough to feed through her pump overnight. We still run into trouble with the pump when we try to push homemade formula through. Our other option is to move all of her feeds to when she’s awake, but this means 5 feedings during the day. When you consider the fact that she wakes at 8 am, naps from 1-5, and goes to bed at 8 pm, there aren’t a lot of waking hours left to squeeze 5 feedings in! She’s awake a total of 8 hours and there are a lot of other things she (and we!) would like to do besides sitting still for a feeding. *Sigh* We’ll figure something out!

On the homemade formula side of things, I’ve started branching out to more than just my basic recipe that I posted before. It started when I was in a pinch one morning. She needed fed, and I didn’t have all the ingredients for my recipe (sorry to disappoint you if you thought I was perfectly organized all the time – ha!). This led to me looking around at what I had and essentially throwing things together. That morning, it was some oatmeal, fruit, yogurt, kefir and hemp butter. I realized that I would be thrilled if she ate that by mouth, so it should be fine to feed her by tube! Since then, I occasionally just “throw” things together that are handy. Having the core knowledge of fat, protein and calorie content helps a lot. I just try to throw in things that are balanced with the goodness she needs. My base recipe is still my staple, and I usually simply tweak that a little with different fruit & veggie additions, but every now and then, I mix it up with a few leftovers from dinner the night before, or something I have handy in the pantry. We haven’t had any problems with her tolerating anything (I still stay away from cow’s milk, since it upset her stomach in the past). It’s nice to have the added flexibility, and she seems to be maintaining or gaining weight just fine.

We’re still not having much improvement with oral eating. She nibbles, and she’ll occasionally try new things, but there aren’t too many calories being consumed that way. Suggesting to her that eating by mouth will mean no more tubes and pump is only met with extreme distress. She WANTS the tube to feed her! She NEVER wants her “special button” to be taken out. I think part of this is due to her thinking that taking it out permanently will hurt, but I think most of it is simply due to the fact that it’s all she has ever known. It’s kind of a part of her. Taking it out is the “unknown” and the unknown is usually scary. Our one bit of leverage is that she HATES having a new gastronomy button placed every 4 months. With a passion. She’s a little more receptive to the idea that eating by mouth means that we don’t have to keep changing the button, we just refrain from mentioning that there would be a one-last-time removal of the button along with that. The bottom line is that I think she just has to do this in her own time, when she is ready. I think we just have to stop trying to push our schedule. Always easier said than done.

We have basically hibernated through the winter and are feeling a little spring-feverish. We’ve worked on PT and OT here at home (though not as rigidly as if we had attended appointments), and we see improvements in lots of areas. She still really struggles with holding anything to write or draw with for an extended time. She fatigues very easily, and gets frustrated when she can’t make straight lines. Because she has no measurable grip strength, her lines all look very shaky and uneven. It’s a lot of work for her to control her muscles and a pencil or crayon. It’s hard for me to see her get so frustrated. She LOVES anything art-related, and loves to work at her easel, but she quickly fatigues from standing in one place. I finally found my way to an IKEA store (I had never been in one before) and found a Mammut stool that is PERFECT for her to work on at her easel. Sitting is hard for her to do for very long, too, but this makes it easy for her to stand for a while and then sit for a while.

Side note: I thought she might be struggling with some hyperactivity issues because she constantly shifts and fidgets when she’s sitting. She frequently slides one leg off the chair so that one knee remains on the chair while the other leg stands. I asked our therapist about this and she adamantly said that it’s NOT hyperactivity, it’s incredibly low core strength. She said that sitting still in a chair requires much more core strength than most people think and it’s very wearing for CP kiddos. So, really, ANY position for extended periods of time is tough for her, since she has low muscle tone everywhere.

Her sensory processing issues are much, MUCH better overall. She still hates loud noises and will cover her ears and complain, but at least she doesn’t immediately meltdown or scream in terror. She is still very sensitive to bright sunlight, but as long as we always have her sunglasses along, she manages without melting down. She has much more tolerance for touching a variety of textures and will now even play with her “slime” or in sand without freaking out and resisting. She still has definite sensory seeking or sensory avoidant days, but we’re getting used to her signals and learning how to adjust to what she needs. We were having a lot of trouble with her settling for sleep, but then remembered her weighted blanket (thanks, Jenn!). It makes a world of difference, and she’s been sleeping with it every night. Her other big hurdle was her oral fixation and the tendency to put fingers and objects in her mouth. Her chewy necklace has really helped with this. I actually ordered the Kid Companion necklace for her, and she hated it. Boo. She said it was “too hard.” She loves that the teether is more “squishy” and has more give when she bites. The good news is, I kept the lanyard from the Kid Companion and used it to solve our necklace problem. Perfect! She does get a few weird looks when she’s wearing a teether in public, but who really cares?

She struggles a lot with shortness of breath and wheezing. It’s frustrating for her when she’s around other kids, because she wants to run and chase like they are, but when they are just getting wound up, she is exhausted. She frequently has to announce that she needs to rest and sits down, gasping for breath while the other kids continue obliviously. It’s hard for me to watch because I feel sad for her. Our pulmonologist appointment is coming up in May, so we’ll see what he has to say at that point.

We thought we had escaped the dreaded crud of cold and flu season this year, but yesterday she started with something the doctor thinks is viral. She’s completely congested, running a fever (101 this morning), and coughs whenever she lays down, which makes it really hard to sleep. We’re pushing lots of fluids, trying to make sure she gets lots of rest and starting Rynatan to hopefully dry up all the mucus before it moves to her lungs. We’ve had a lot of success over the last year if we start Rynatan at the first sign of any cold/flu congestion. It’s such a relief to have something that helps us dodge pneumonia and hospitalization.

We’re heading to FL for a couple of weeks in just a couple of weeks. The sunshine and warmth will be good for us all. Jenna’s uncle is getting married down there, and between a wedding, seeing her grandma and grandpa and the fact that we’re renting a PINK cottage, she couldn’t be more excited.

I’ll try to do better at posting more ideas for home therapy and maybe a recipe or two now and then. Until then, if you have any questions about where we’re at or what we’re doing, please feel free to ask in the comments or email me at psychmamma1 {at} gmail.com.

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6 responses to “Update

  1. PrincessJenn

    March 15, 2011 at 4:25 pm

    I’m so glad to hear she’s doing so well.
    One the wheezing side of things – have you tried giving her a dose of inhalers before she starts running around and playing? Sometimes we have to do that with V (especially if she’s just coming off a cold).

    As for the cough, we found a doc prescribed cough syrup with codeine in it works wonders. Can Jenna tolerate codeine or would it suppress her respiratory too much?

    Hope she continues to make such amazing progress!

     
  2. PsychMamma

    March 15, 2011 at 4:50 pm

    PrincessJenn –

    Oooh! I LOVE the idea of an inhaler dose before playing! Brilliant. Kicking myself for not thinking of it. Also love the idea of cough syrup with codeine, but have no idea about how it might her affect her respiratory status. Adding it to my list to ask the doc! Thanks so much! xox

     
  3. Lynn

    March 16, 2011 at 8:55 am

    GREAT news! She sounds (and looks) SO adorable! Happy Birthday to the Mama too!!! It is because of you that she is thriving at five! I give Natalie feeds while she is sleeping using the bolus method. So if she is sleeping in on a Saturday and I want to keep her on schedule to get the necessary feeds in, I hook up an extension tube and use the 2 ounce syringe at 3 minute intervals. It hasn’t caused any problems.

     
  4. punkinmama

    March 16, 2011 at 10:50 am

    So glad you did this update. I haven’t been around twitter much lately so it’s great to hear how Jenna is doing! And to hear how she’s adapting to FIVE makes me smile!

     
  5. PsychMamma

    March 16, 2011 at 1:56 pm

    Lynn –

    I love the idea of bolus feeds while she sleeps!! Another idea I can’t believe I didn’t think of, and yet another reason why I’m glad to have this blog and the opportunity to connect with other parents and their wisdom! Thanks SO much!

     
  6. PsychMamma

    March 16, 2011 at 1:59 pm

    Punkinmama –

    Good to see you here! I not on Twitter much anymore, either, and I miss connecting with people. Hoping to do a little better at doing it through blogs. We’ll see! Have missed talking with you and hope the Punkin is doing well, too! xox

     

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