My dear husband came home from work on Mother’s Day with beautiful tulips, a wonderfully sweet card and a picnic lunch.
Ok, maybe this is too weird or personal, but Brian’s card to me was so sweet I had to share:
“Dearest Lizard,
I cannot express enough how special you are to me. You are such an incredible giving person. Our daughter and I are sooo lucky to have you looking over us.
All of Kaityln’s progress is due to you and all your efforts – she could not have a better mother. You continually impress me with all that you do for us. On this special day, I just want you to know that I could not ask or even dream of a better mom for Kaitlyn. Oh yeah, and not too shabby a wife either! Love Your Husband.”
I had to show a house in the morning first, but then we went down to the beach to have a picnic lunch. This was Kaitlyn’s first experience at the beach.
Boy, did she HATE the sand. (once again a typical sensory issue). She didn’t’ like even walking on the beach towel, she insisted on climbing on top of me (she rarely climbs on me). Eventually I put her shoes back on and she finally (with much trepidation) ventured onto the sand. After awhile, I took her shoes off again and she felt ok this time about walking barefoot on the sand. (I spoke to Kaitlyn’s PT about this and she said it’s exactly what therapy you should do with someone with sensory aversions). But she felt positively that she did go onto the sand. As super strong SPD cases would never go onto the sand even after all the processes that I went through.
I have to say that picnicking on the beach with a toddler is NOTHING like the nice relaxing picnics Brian and I used to have. It was not the least bit relaxing actually. The beach wasn’t all that warm (typical for northern California), and with the sand and the very active toddler, and the feeding tube it was a bit crazy actually. But it was nice to be outside, not working and enjoying our daughter for Mother’s Day.
Happy Mother’s Day to all of you too!
Kaitlyn “flunked” out of feeding therapy.
Well, I guess our progress of a month ago has gone away entirely. Kaitlyn is now refusing again to eat anything. She’s at least drinking a bit of water and/or juice.
Kaitlyn’s feeding therapist suggested there really wasn’t much more she could do (I agreed) and that Kaitlyn should probably be seen by an OT who has some specialty in SPD (Sensory Processing Disorder), as her feeding therapist agrees with me that there are some sensory based issues taking place.
Just like so many of my faithful blog readers have suggested. (Thank you for all of your comments by the way, I read each and every one of them, I’m sorry I just have been too swamped with work to respond lately). I’ve gotten the 2 bible books on SPD and don’t see Kaitlyn fitting into the neat categories that describe the different types of SPD. Not sure exactly what that all means. Maybe she’s still too young to tell. Maybe her behaviors are just toddler behaviors. Maybe it’s a degree of both. Who knows.
I have been contemplating taking Kaitlyn to an inpatient feeding therapy (well at least researching them), as I feel she needs some intensive longer-term therapy to get over her oral aversions (or complete refusal to eat).
Some good news to share: I posted that Kaitlyn failed her feeding therapist onto the Micro Preemie Support group that I started. http://groups.yahoo.com/group/PreemieBlogMoms/
And Emily (one of our members) responded with a clinic program that could come to the house! I immediately went to the website: http://www.clinic4kidz.com/ and discovered that they do travel to California. I contacted the organization and the founder/Dr called me and I then discovered that not only did they travel to California, they were actually moving from Texas to California… AND…..They are moving to Marin County, which is where I leave. Their new office will literally be less than 5 miles from my house! Wow!
I already have an appointment for the first step, for the Dr to come to my house to do a long evaluation, and then follow-up with an intensive 4-5 day program. I hope and pray that I can get my insurance to cover this….I don’t have a choice, Kaitlyn HAS to take part in this program….no matter what the cost.
I am soo excited I can hardly stand it. I liked the program as they work within our environment, they look at the whole picture of the child (sensory issues, autism, medical, psychology), everything. This is EXACTLY what Kaitlyn needs! I’m thrilled.
Our evaluation is mid June. I cant’ wait!
A funny thing happened today. My nanny came home from the park and told me that she met a mom there who knew Kaitlyn because of this blog! She knew Kaitlyn had a twin sister Corinne. If my fellow park-goer is reading this, be sure to comment here on my blog!
Some Pictures to enjoy!
Brian plays hockey with the San Francisco Fire Department Team. I took Kaitlyn to watch a few weeks ago. I felt like I was in the TV show: "Rescue Me" http://www.fxnetworks.com/shows/originals/rescueme/. A firewife, watching the fire department team with other fire wives routing the team on....
A picture of the fire wife and daughter routing dad on.
Well, I guess it's not ordinary fire wife stuff. See all the specks on the glass? That is Kaitlyn's food. As I was trying to push her food into her gtube, it got clogged and back-fired all over me, Kaitlyn, and the glass. If I wasn't so embarrassed (I hadn't yet met the other fire-wives), I would have laughed more. I was COVERED in food. It was all over my face, clothes, everywhere! Ugggh.. Hey, at least it wasn't vomit!!
Kaitlyn LOVES to put things on table tops. Here she is with her shelf (we had to move the phone book and other items that used to sit there). She's helping me with my real estate papers. I'm not really sure why both her tags are sticking out, her pants are rolled up as they are too long, as she' too little.
Here she is carrying around her bag of Flax Seed. (This is an ingredient to her Real Food Blenderized Diet that we feed her)
A close of up the flax seed.
Kaitlyn has taken a liking also to this small pillow. She loves to rub her face and head on it any chance she gets. The bag of flax seed and the pillow are both a bit heavy and we caught her walking around carrying both - it was very funny - she's always very busy.
Mother's Day at the beach. This is typical Kaitlyn form. Not wanting to be held, squirming to get away. This was after she climbed up on me as she didn't' want anything to do with the sand.
Squirmy Kaitlyn.
Much happier cruising around
Mom and Kaitlyn on a walk with her Easter egg.
A close up of Kaitlyn and her dad.
Maybe some day Kaitlyn will become a surfer chic!
Feeding Kaitlyn on the beach. Not an easy task.
Dad is "pushing" food here just as Kaitlyn is trying to make a get-away.
Not really a fan of her hat. This was the best Mother Daughter picture we could get on Mother's Day.
10 comments:
Hi Liz,
Happy Belated Mother's Day - sorry I haven't called, its been crazy busy and life just seems to get in the way of having a nice evening with some Mom talk.
I managed to get Presleigh in with our OT next Tuesday for her evaluation and we're very excited to have this done. When I was talking with the OT, she agreed with me that we've got some things to deal with, so... we'll see where that brings us.
I will try and give you a call over the weekend. In the meantime, hug K for us and we'll talk soon!
Hi, I have left comments a few times in the past, and I just had to leave a quick one today. I just love that picture of you and Kaitlyn walking on the beach. What a great Mother's Day shot. I pray for you and your little girl often. ~~Shana
Hey Liz!
Wow that is awesome about that program! Have you tried to skip her tube feed again?
I am glad you had a good Mothers Day Liz! You deserved it! And those pictures are awesome....Kaiti is getting pretty tall!
Hi Liz - I love your blog ! Quick note, looking through the photos I notice you are using the thin longer extension tubing to feel the blended diet. I could never get Keith's food to move through the thin tuing. We use the shorter thicker tubing. I think its about 13 inches long and maybe 1/4 inch in diameter. Logically, it seemslike it shouldn'tmake any difference because the opening of the port and the end of the tube are the same, but truly - the BD goes through the thick extension and not at all in the thin extensions for us! Hope this helps - (each MicKey kit comes with one this and one thick extensions tubing..... if you need a thick one, email me and I will mail you one! yuka@persico.net - <3 me
baby steps, baby steps....remember everything is on your daughter's timetable not yours. feeding therapy is just like the nicu...two steps forward and one step back and forth and back and forth and so on. my daniel flunked out of feeding therapy too and even after his pedi recommended to gi that we pull the tube last year, he backslid. my pedi had to talk me out of restartin g the tube feedings then.
the sand on her barefeet made me smile. daniel HATES to have bare feet. HATES it! the only time his ffet are uncovered is in baths. it is to the point a bride who asked him to be her ring bearer at an outdoor barefoot wedding later this year consented to let the little man wear shoes and socks. anyway, lately he has been spotted frolicking barefoot in and out of the house the longest lasting about an hour. i am glad to see you picking up on your sweet girl's sensory issues.
hang in there and a belated happy mothers day to you. i have been thinking about you a lot lately.
hugs.
I was thrilled to read about the feeding clinic that will work with Kaitlyn at home! Hopefully that will be exactly the help she needs to start overcoming her aversions!
And that card from Brian is one of the sweetest things I have ever read. Sounds like he's not too shabby a husband :) You are blessed.
Happy Mother's Day, Liz.
Liz. Happy Mothers day....well I know its already passed but here I am. The pic of you and Kaitlyn is really sweet. Mom trying to put on her hat. :) Brian's card to you was dear. I just wanted to say hello and Ill be getting your Tshirt to you really soon. I had to reglue a new flower on it cause Abigail ate half of it! OOPS!
Good night,
Shannon in Austin
Liz, just a quick note. While it's true that hating grass and sand CAN be a symptom of a sensory issue, I've been told by several medical folks that it's also very common among perfectly healthy, "normal" kids. Some kids, they say, just hate the feeling of being surrounded by grass, or of sinking into sand. With time, they get used to it. And in these cases, it is not considered a sensory problem.
Anastasia hated grass at first, but now she's made peace with it. We've only tried sand once, and she would only just barely touch it. We just bought her a sandbox, in hopes of helping her to "make friends" with sand :)
Keep up the great work!
Kristina
Liz, after I posted, I got to thinking you might find me a royal pain. I don't mean to dismiss your worries that Kaitlyn could have a sensory problem. It's just that if you look at the list of symptoms for sensory issues, many of them can apply to perfectly healthy kids. I only wanted to point out that these aren't *necessarily* symptoms of something bad. BUT a mom's intuition is a powerful thing. Just know I'm not trying to dismiss that.
Hugs,
Kristina
RE: Sensory issues...yes, many of the symptoms can be experienced by developmentally normal kids. It's more a matter of degree...HOW bothered are they by sensory things.
And be aware, too, that kids with SID don't always fit into neat little boxes with their symptoms. My son is hypersensitive to sounds, but hypo(under)sensitive to touches...his vestibular sense needs TONS of stimulation, so he's a crasher and a banger...he spins on the swings excessively and has a constant need for motion. SID kids rarely fit a set pattern...different senses can be hyper or hypo. My husband, who also has sensory issues, is very, very hypersensitive to touch...he describes the feeling of cold water on his skin as a knife-like pain. A light touch from my fingers is exquisitely painful to him. Everyone is different, and it's often just a matter of degree. HTH!
Happy belated MOther's Day, and know that you're in my prayers, Liz.
Michelle from PROM list, so long ago. :)
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