My Little Lennon Bug…Has the Sweetest Smile…

10 Mar

(heavy sigh)

I have been worried about Lennon’s development for some time now. As most of you know, she had metopic craniosynostosis and had to have corrective surgery last August. At the time we were concerned because she had begun regressing (had been talking and stopped, was not attempting to walk anymore, etc) and there is a high rate of Autism and other learning disabilities associated with metopic cranio. She had also stopped making eye contact, did not want to be touched and would hit herself repeatedly in the head. Everyone was terrified, including her pediatrician who started sending her to all sorts of specialists to be evaluated…thinking she might very well be Autistic.

After the surgery she made a U-turn developmentally. She still lags behind Evy quite a bit…but she is now walking and talking. She LOVES to be cuddled (too much, at times, but I’ll get to that). She makes eye contact, she smiles, she  plays with others, shows empathy, etc. SO, I don’t think she is Autistic…but unfortunatly something is still just not quite “right”.

She has huge issues with texture. It is mostly with food – she refuses to eat anything new and often even old favorites get rejected (we have her on Pediasure because she still weighs just 16 lbs…NOLAN weighs 16 lbs!). But it’s with other things too. At Halloween time we took the girls to the pumpkin patch and Lennon lost her sh*t when we tried to put her on a stack of hay to take a picture. She touches most things with the back of her hand ONLY, *if* she touches them at all.  Grass is another huge “no no”. And soap. And anything “slimy”. And feathers. And cotton balls. You get the picture.

And if you try to make her eat, or touch something, she freaks the eff out (read: hysterical crying). Oh, and clothes are an issue too…she hates, hates, HATES socks, bibs, diapers……………..::sigh::

Tonight, when I was drying her off after her bath, she was laughing hysterically because the towel tickled her and she was very overstimulated. I was not being soft with the towel either, I was trying to dry her off quickly because Nolan was screaming to be fed. In other words, it shouldn’t have tickled.  It was an inappropriate reaction. Lots of things “tickle” her that shouldn’t.

She also spends a lot of her free time burying herself under the stuffed animals in her toy bin, crawling into Nolan’s Bumbo seat or his bouncy seat, shoving herself into corners or crawling into people’s laps. She likes to be cacooned and/or held really tight. This helps with the over stimulation she is feeling…I used to do therapy with an Autistic child where I would sit him on my lap and squeeze him…she loves that.

She is receiving Early Intervention services but I worry that there is more that we could be doing. I’m just not sure what though! I don’t know if she is Autistic, or if it is just a sensory issue (perhaps it’s PTSD from being in the hospital so many times?), or something else?

We have tried doing brushing/compression with her…it does NOTHING but piss her off.

I would love any input or ideas. My sweet, beautiful little Mini. She has been through SO much already, I just want her to be okay.

**************************************************************************************************

Hubby had his second IVIG today. This was a six hour treatment and this time he did get sick, although not too badly (woohoo!). Just one more to go (hopefully!).

And I’ll update on SIL next time so I can PWP it. But, lets just say that Nolie will be getting a very special gift for his first birthday! Squeeeeee!

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19 Responses to “My Little Lennon Bug…Has the Sweetest Smile…”

  1. seussgirl March 11, 2010 at 3:38 am #

    I think sensory issues are pretty common for preemies. Our EI said they could evaluate for it when we thought J might have food issues. Do you have that option? Also, I do know that socks are fairly common problems for NICU babies – all that sticking in the feet seems to make them super-sensitive. I don’t have a lot of other thoughts – just wanted to let you know that I’m thinking of you and sending good thoughts for you both!

    • mrslala March 11, 2010 at 8:23 pm #

      I’m really hoping that it’s just a preemie thing. ::fingers crossed::

  2. Ash March 11, 2010 at 3:38 am #

    If I remember correctly from working in the NNU, I think it’s quite common for kids who were in NICU for a long time to have sensory oddnesses because of the lack of normal sensory input in their early life.

    I’m not sure.

    Either way I hope things will be okay.

  3. Bean March 11, 2010 at 5:42 am #

    I don’t have any advice. Just wanted to say that I’m thinking of you. You have had and have so much to deal with I just can’t imagine. Am thinking good happy and healthy thoughts for all of you.

  4. leahboral March 11, 2010 at 6:03 am #

    She is such a beautiful girl….I know that you are doing all you can for her. You have more on your plate than most! I don’t have any advice but I did want to just say that I was thinking about.

  5. Sheri Rouse March 11, 2010 at 6:27 am #

    Holy cow, this sounds like me. (Well not the crawling into the baby seat or toybox! LOL) I have OCD and textures gross me out. I hate bumpy things, prickly things were an issue when I was young. Food tastes change often for me and I perseverate on certain foods then reject them later. I don’t like chunky food, like hunks of meat, but will eat them if they are thin. I hateyogurt texture so I add grape nuts. I have learned over time (and with meds when I was an adult) to alter things so I can handle most things. Bumpy gourds are still my nemesis! (Weird I know!)

    My bio-kids have lesser degrees of this. My son gags when he sees his skin prune-y after the bath. My daughter loves weighted blankets and being tightly wrapped.

    • mrslala March 11, 2010 at 8:24 pm #

      Hmmmm. VERY interesting! I, too, have mild OCD. I try to live most of the time in complete denial of this fact…but I totally do! I wonder if she could have inherited that from me.

  6. life2d March 11, 2010 at 6:40 am #

    Could it be some degree of SID (sensory integration disorder)? I know my daughter had this when young, but has outgrown it. Praying for your little one…

  7. Jamie March 11, 2010 at 3:54 pm #

    That’s tough. Where you have experience with an Autist child, you may be more in tune. On the other hand, with each pregnancy I got more scared of what could go wrong because I was more knowlegeable of what could go wrong. It seems pretty severe though. Can the Early Intervention do testing with her to diagnose Autism? Sorry, I’m not too familiar with the diagnoses.

  8. Chelle March 11, 2010 at 3:58 pm #

    Sounds like my daughter(also a twin). She wasn’t a preemie(39w5d!), though.
    Never spent any time in the NICU, but she has Plagiocephaly/Bracheocephaly, Had Tort., and has Sensory Integration Disorder. Also mild OCD. I have always felt it had to do with the Plagio/Brachy somehow?
    The sensory thing was really bad when she was Lennon’s age, but not so bad now at 10 yrs old…. or at least she’s learned to deal with it enough that I don’t notice it as much. And we’ve learned to adapt – all tags on clothes must go, socks must never have seams or texture, limit TV and keep hair cut short so it barely needs brushing 😀

    I don’t know if that’s the case with everyone, but I just wanted you to know that it CAN get better….

    Best of Luck!

  9. S March 11, 2010 at 6:45 pm #

    You need a hug! You are such a wonderful Mommy to those three little things, and they are so lucky to have you! I can’t remember what your career was when you were working with autistic kids, but it sounds like you know many “therapies” for sensory integration issues. My background is in counseling. I was in an elementary school for several years and had several children pass thru with SI things going on. I want to interject for a moment and say that I believe that most people and specifically many children have some sort of SI issues. My five year old constantly has a clothing issue with things making her “itchy”, she loves to be burritoed (is that a word??) up really tightly and is a picky eater. She is highly intelligent, reads, interacts, acts bratty and is a most typical 5 year old. She’s normal….. I like to sleep with several blankets for the weight, like certain clothes b/c they just “feel good” and don’t like the texture of meat…I’m normal (some may not agree fully with that statement). I think most people have aversions to several things…..

    With all of that being said, you are her Mommy and know her best. You know when you feel like something just isn’t exactly right. I think she’s had a stressful year. I would bet that she will be a full functioning kindergarten student in a few years.

    So you’ve tried brushing…did you do it gently or with a little pressure? What about one of the weighted vests? Will she touch things if someone else prompts her (besides you or daddy)? I would say 100% talk to early intervention. Can they set up some occupational therapy sessions for you? I bet within a few months of some therapy and as she matures she will work it all out.

    I can tell you are worried. I’m sorry. You have such a full plate all of the time. Hugs…..

    • mrslala March 11, 2010 at 8:30 pm #

      I love the tought of her going off to kindergarder 100% well adjusted and happy. =) Thank you for that. We’ll get there, I know we will.

      The brushing: we did it firmly and followed with compressions. If anything, I noticed that it made her MORE sensitive. Maybe if we did it for a longer period of time (we only do it consistantly for a few days at a time and then give it up)?

      She will not touch things no matter who prompts her. Actually, they spend the most time with Daddy and will usually do things for him that they won’t for anyone else…and she won’t even eat or touch things she doesn’t like for him when shes in one of her “moods”.

      She is already getting Early Intervention services including OT, PT and “floor time” therapy. I don’t feel that the FT is helping at all anymore…all the teacher does now is come and play with them. The OT has asked her to work on them on specific things, but it’s not happening. I’m hoping to do more myself once it warms up (going to the park, the beach, etc).

  10. Michell March 11, 2010 at 7:40 pm #

    I really don’t have any advice but thinking of you and hoping it’s something she grows out of. Keep pushing for answers though.

  11. Michell March 11, 2010 at 10:10 pm #

    Hey there,
    I don’t think I have your e-mail address so I couldn’t just e-mail you the name of the book. The book was called the Secret Life of CeeCee Wilkes and it’s by Diane Chamberlain. It was fabulous.

  12. Aunt Becky March 12, 2010 at 11:21 am #

    My son Ben had tons of food issues/texture issues as well, and he did a ton of OT and got over a lot of them. I still have a bunch of texture issues with food myself (cantaloupe and other melons make me gag even though I adore them) and I just kind of manage them. It’s kind of just part of who I am. Hang in there. xoxo

  13. Two Makes Four March 13, 2010 at 4:19 pm #

    Ugh. I am so sorry. The worry of being a parent when nothing is wrong is difficult enough as it is — but to see your child struggling is just too much. I hope it’s a phase, I hope it passes and/or that you find further services to figure out how to make it better.

    BTW, I guess I don’t have your email address? I’m dying to know what the BIG news is!

  14. Ashley March 17, 2010 at 7:58 am #

    I’ve been watching the price is right, I was looking for you, then I realized, I have no clue what you look like, so it really didn’t do me any good lmao 🙂

    • mrslala March 17, 2010 at 8:10 am #

      I totally forgot that its already on in other areas! Lol I was wearing a blue UCR shirt…front row to the lefy if your facing the stage. Brown hair. =)

      Connected by MOTOBLUR™ on T-Mobile

  15. Kristine Brite March 20, 2010 at 12:37 pm #

    Big hug. Sounds like you’ve been through so much already. This is my first visit to your blog. Lots of love. xoxo

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