Katie's Progress

Check this out!

2012-02-03T08:54:00.000-08:00

All of the sudden, Katie just took off and walked around our yard for awhile! Here she is at about 25 steps, this is so incredible - it's as if something just clicked! We are so proud of how far she has come.

Walking!

So true!

2012-01-04T09:31:00.000-08:00

The holidays were crazy busy! However, a good crazy... With Katie at home for two weeks I had no time to get on here, and now I only have a few minutes but will post something else soon. I found this and had to share:

“I thought I would have to teach my daughter about the world, it turns out I have to teach the world about my daughter. They see a girl who can not talk, I see a miracle who doesn't need words.”

- Unknown

ER

2011-11-29T13:01:00.000-08:00

Katie feeling much better on Thanksgiving!

Oh my gosh where did November go? I am sorry blog, that I have totally neglected you.

We had a bit of a rough go of it when the school called me and said I should pick Katie up because she was being too quiet (not her usual "screaming with delight" kind of girl) and the fact that she kept arching her back, constantly. So I picked her up and took her right to the pediatrician. He wasn't really sure what was going on, thought it might be constipation but checked her out and it didn't seem like that was it. He said to take her to Phoenix Children's Emergency Room if she got worse or not any better by morning. I also noticed that along with arching her back (whether standing, or in the high chair) she also seemed to have restless legs. Having worked at Mayo Clinic for 10 years, I was worried because I remembered that restless leg syndrome was a neurological issue, which is scary since Katie has those issues anyway.

So in the morning she was still doing these things, although never acting as if she was in any pain, and not babbling or making any sounds. I started crying, thinking she must need an MRI to see what is going on in her head that is making her arch her back and move her feet so much. I was so worried. I had to have Paul call Katie in sick to school because I was so upset.

We got to the ER, which was a WONDERFUL place, and they took care of her right away. I was surprised when they wanted to do an x-ray of her stomach, but I thought I'd wait to ask about doing a head MRI. Crazy enough, her x-ray showed extreme constipation - they showed us the x-ray and it seemed to me that it went from her neck all the way down, well, however high the colon goes anyway. So they did an enema ( I won't go into those details) and then Katie was on a lot of Miralax for several days (she takes it anyway, but we have since upped the dose to 1 capful a day) and one crushed up Dulcolax (supposed to push it all out once the Miralax has softened it), which worked great! I have never changed so many sheets in my life!

Katie has always had constipation issues, it seems to go hand in hand with low tone. Since this whole episode, Katie has been doing great, and if she gets irregular I just give her an extra capful of Miralax later in the day and then WATCHOUT!

Goodbye October!

2011-11-02T12:27:00.000-07:00

I am so glad October is over! Will post some new info next week, but for now these pics of my Lil' Eskimo will have to do.

Tonsils

2011-10-06T11:08:00.000-07:00

Recovered!

Katie's tonsils and adenoids are gone because they were really big. She also had a turbinate reduction that should help her breathe through her nose rather than her mouth. (see this link): turbinate reduction info

Katie had to stay home for what ended up to be the longest week of my life! She had the surgery on a Friday, and by the next Friday I thought I might need to be admitted. I know most kids probably do pretty well, but Katie had a really hard time with the pain, and I had a really hard time not being able to know exactly how she was feeling and what she needed. I had to keep her on her pain medication (every four hours!) or she would be crying. And the medication tasted terrible! Poor kid, I felt so bad having to pin her down to get the medication in. But those meds helped SO MUCH!

So for a week she wasn't eating anything, which is expected, but at least she started drinking on day two, right as we were getting ready to go back to the hospital to get an IV hooked up for fluids for her. Whew, that was a relief!

It has been a few weeks now, and Katie is back to eating every bit of watermelon she can get! She started feeling better about day seven, and since then she has been eating like crazy. And her smile is back!

I am glad she had the surgery, I think it will help her a lot with breathing and maybe some other things. But I am so glad that hard week is over, and that my happy girl is back.

SPIO

2011-09-22T11:21:00.000-07:00

Here are some pictures of Katie in her Spiderman type "able-to-scale-small-buildings" outfit. Actually it's called a SPIO. We have had the pants for almost a year, and just got the vest this summer. But since August in AZ was the "hottest August ever!" We did not put the vest on her until it cooled down to at least 105. That sounds so ridiculous!

Katie has worn both pants and vest to school everyday for the last three weeks, under her clothing. The pants help her with knowing where her legs are in space - and I can see that with the steps she takes. With it on, her steps are much more normal and not so high. The vest helps her with being more calm and I noticed it helps a lot with her arm movements, they are not so erratic. When she feeds herself watermelon (her best motivator!) she can get it on the fork (actually "pushing" the fork into the watermelon) and get it to her mouth in a much smoother motion than without the vest on.

These SPIO's are not cheap, but seem to be helping Katie a lot. This is from the Spio website: SPIO is a compression system designed to help children with special needs including cerebral palsy, autism, Down Syndrome, sensory processing disorders, and other neuro-muscular delays. SPIO is made of a patented Lycra fabric with a unique multi-directional stretch. SPIO offers a variety of comfortable and affordable styles that can be worn under clothing all day.

So glad winter is just around the corner!

Signing!

2011-09-06T12:59:00.000-07:00

Katie can do the sign for "more"! We have been working with her for a while, and although it is not exact, it works for her. She has been very consistent in the last week with this sign. Especially when it comes to watermelon... I think she would eat a whole one in one sitting if I let her.

Katie can't quite get her hands in this position, but instead does it as a clap with open hands. This is quite exciting for us, I hope to have more signs soon!

And since she has started Kindergarten, she has been babbling up a storm. It's almost as if something has clicked. I think this is going to be a very good year for little Katie!

a busy summer!

2011-08-12T08:36:00.000-07:00

1st day of Kindergarten

It has been such a busy summer, I will have a few posts following this one in the next week.

We went to Tucson for a few weeks for the Conductive Education program, and I saw many of the same kids from last year. I was so surprised to see how much they have progressed in a year! The majority of the kids are more severely affected than Katie, and it was a real eye opener to see that these kids were making a lot of progress with sitting and even walking with help. These are kids that I thought might never be able to even sit up - and here they are (much taller!) and walking with assistance! Many of them, I noticed, now have a great posture, where last year they were somewhat leaning forward and hunched over. It was incredible to see how much this program helps these kids.

Katie is doing well, especially following seven weeks of intensive training: having someone help her focus on walking, drinking from a cup, etc...

She has started Kindergarten and seems to love it. I was worried that she would get tired at school because she was still napping for two hours at noon every day (up until Monday!), but the teacher says she is "very busy" and hasn't needed a nap at school. Adjusting well to a long school day and in bed by 7:15 works for me! (Katie, not me)

Summer Program / Conductive Education

2011-07-08T13:07:00.000-07:00

Katie is in the summer program again for CE, and is doing very well! She goes for 3 hours a day and they work on a lot of different things, but mainly her walking. One thing they are focusing on is teaching her to walk a few steps, then stop. That way she won't be building up her speed and ultimately falling. Here is Bea, the conductor, working with Katie. I can already see Katie's wonderful improvement! Thank you Bea!

Here is a video: Conductive Education

Katie on msnbc.com!

2011-07-07T07:22:00.000-07:00

Katie made the national news! Click here to read: msnbc article

Conductive Education

2011-06-14T14:03:00.000-07:00

We have Conductive Education (CE) here in Phoenix for the month of June. This is such a great program for kids with motor disabilities!  Katie enjoys it, and I think it will help her so much in reaching many of her goals. Each child has their own aide/caregiver who works one on one with them. The Conductor also works very closely with each child, and instructs each aide in what to do according to each child's needs and capabilities.  With Katie, they focus mainly on her walking goal, and with 3 hours a day - Whoa! Is she ever tired by the time we go home!

One recent observation about Katie:

Last week, Katie was sitting and playing with her blocks (at home) which have a round hole through the middle, and a cylindrical block that fits in the hole - and she consistently fit the cylidrical block into the hole. Her hand / eye coordination is obviously improving, which was a big surprise to me. I didn't think this type of progress would happen for quite a while. Whether this is related to CE or not, I don't know. But I do know that all of the different therapies (and there are a lot!) we take Katie to are making a difference in her life. And Conductive Education, although more of a program than a "therapy," makes a HUGE difference in her walking ability, as well as other goals we have set, like feeding, focus, etc...

I am excited to see what else CE brings to Katie.  I think this program helps her in more ways than I know. For more information, see the following websites:

http://www.swgaitway.org/

http://www.cerebralpalsy.org/news/conductive-education/

Barbara

2011-05-23T11:16:00.000-07:00

Katie doesn't say a whole lot - a few words here and there but nothing consistent except "Mama" (when she's mad, or scared, or we have a babysitter). Katie has a therapist named Barbara, and she has said her name pretty consistently when she sees her, and prompted. The "b's" are easy for her to say. The other night my friend Barbara came over, and Katie would not stop saying her name. So here it is:

After I stopped filming this video, she actually said Barbara with one "r" in it. "Ba-bra". But of course she waited until the camera was not rolling anymore...

Katie's latest walking video!

2011-05-16T12:49:00.000-07:00

I guess I better find out what that toy is!

Easter

2011-04-26T09:21:00.000-07:00

Happy Easter a few days late! Katie enjoyed "helping" color easter eggs and then did a great job finding them in the yard. She put them all into the basket, which is a goal we have been working on - putting things "in". (and leaving them in!)

Chiari Malformation

2011-04-19T11:02:00.000-07:00

"Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination."

Thank you for that info National Institute of Neurological Disorders and Stroke.     http://www.ninds.nih.gov/disorders/chiari/chiari.htm

Katie does not have this, but for about 3 months, I thought for sure, she did. So many of the symptoms matched up: (lack of) balance, coordination and speech, hypotonia, developmental delay, and who knows if she has headaches or dizziness since she can't tell me! The more websites I looked up, the more symptoms I found, I think over 20 total! The girl who told me initally over the phone that Katie does not have this (reading from a report) must have thought I was nuts when I sounded all disappointed.  She said to me, "This is a good thing that she does not have it!"  I just figured it might solve all of Katie's problems if she could have surgery - maybe she'd come out talking - I have heard this has happened.  But after thinking all about it, I am glad she doesn't have it, and we are moving along at a really good pace, with her walking progression in- particular!

Pam, someone whom I have never met, was the person who saw Katie's tv debut and got in touch with me. She suggested I look into this because when she saw Katie walking, she said it was like watching her daughter walk.. Katie had the MRI in January and of course I was stunned when I found out she did not have it. So I had a second opinion, and a third - and, well, they all say no. Thank God for people like Pam! Even though it is not what Katie has, I have something to mark off the list, and that is important to me

I hope this info might help someone else. It is an easy thing to diagnose in an MRI and then have a neurosurgeon look at it - that's what we did anyway - 3 times! I am posting this because it is not a well known diagnosis, and the only way to diagnose it is through an MRI (cervical spine, I believe). There is hope if you have it - usually they can do surgery. I met a mom like me who takes her son to SWAN Rehab where Katie does her treadmill therapy, she had the surgery done a year ago (by Dr. Ruth Bristol here in Phoenix) and her symptoms, which came on suddenly - are gone.

I hope this information helps someone!   http://www.ninds.nih.gov/disorders/chiari/chiari.htm

A bit of walking!

2011-04-06T12:09:00.000-07:00

Here is a recent video of Katie walking across her room:

a little bit of walking!

Conductive Education in Phoenix

2011-03-30T09:59:00.000-07:00

Five of us local moms have raised just about enough money ($15,000) to have the Conductive Education summer program in Phoenix! We are still short $5,000 of the 20k needed - but we think we can raise the rest in order to have the summer camp here!

Click here to find out more about the program that is based in Tucson. If donating, please specify it is for the Phoenix location/Amy: http://www.swgaitway.org/default.asp

Thanks to all of you who have supported this cause!

Amy

Big Girl Bed

2011-03-17T21:39:00.000-07:00

I'm sure many of you can relate to the horror of putting your child in the crib, hearing a ruckus a few minutes later, and then finding her standing (OUTSIDE OF THE CRIB!) at her toy box playing with the cd player. Oh yes, the closet door was wide open, the lamp and side table knocked over... bring back any memories for anyone? This was our night recently, and although we knew it would happen someday, it wasn't supposed to happen the night before Paul and I left for Vegas! Which just happened to be our first outing together, without Katie in tow, in several years.

Katie is now in the "toddler bed" version of her crib which basically means the front of the crib is taken off. We were excited that we finally had some baby-proofing to do for our 5-year-old, Woo Hoo! About time! (Yes, Katie just had a birthday) We had to take everything out of her room, duct tape the light switches (because the first night she kept turning them on), put those things on the door handles, put up some high shelves, etc... So here we are a few weeks later and it is going pretty good, this whole "big girl bed" thing.

moving forward

2011-02-23T09:09:00.000-08:00

I can't believe it has been almost a month since my last post. We have all been suffering from this coughing, sinus, sore throat thing that is going around, me for 3 weeks! UGH!

Katie's newest thing is that she will scoot over to me and grab my hand, pull herself up, and we will walk to wherever it is she wants to go. Usually to the playroom, or the kitchen is popular when she spots some cookies on the counter. It's nice that she can have a say on where she wants to be, usually near the sweets!

She also understands at horse therapy - if she pats the horse, it will go. She loves being on the horse and last week she was hugging it most of the time.

Two small steps for Katie, one giant leap towards her potential!

Oh, and the tongue thing is over with, for now anyway.

Another tongue episode

2011-01-25T11:16:00.000-08:00

It took me days to find this Campbell's Soup logo! But look at the resemblance - totally worth the wait! Except for the uncombed hair and lack of bow - bows just don't happen in this household.
Oh I've tried....

Katie has been doing this with her tongue for four days, and it is pretty consistent. I think it just means that since the tongue is a muscle, (and didn't I read somewhere, "the strongest muscle"?!) and the fact that she has low muscle tone, maybe her tongue is finally strong enough to be able to do this.

If you read my blog on 9/30/10 you'll remember Katie's other tongue phase, where it hung out of her mouth for about three weeks. It drove me crazy. Well, all I can say is at least this phase is a cute one, and unlike the last one, I am not worried about walking through the mall with other mothers giving my child a pitiful look - that was horrible. At that time I just wanted to scream, "No, no! Her tongue doesn't usually hang out of her mouth! It's just a phase - she really is model material!"

If anyone out there is an expert and knows anything about the whole tongue thing, please let me know. Because, I am assuming it means her mouth and tongue are getting stronger, and that she will be leading a Toastmasters meeting someday.

Glasses

2011-01-07T07:59:00.000-08:00

I took Katie to have her eyes checked because lately she keeps throwing off her glasses - I figured she needed a new prescription. And the fact that they are pretty scratched, it was time for a new pair anyway. Imagine my surprise when the doctor told me that Katie did not need her glasses anymore! Her vision has corrected itself, and she is glassses-free! He said that this happens about 50% of the time in young kids who are far-sighted. So, I don't know if the stem cells had anything to do with this, but for me it is one less hassle, and that is huge! Now to tackle the hair combing dilemma - I wonder if the crewcut will ever become a new fad for 4 year-old girls? Isn't Shiloh Jolie Pitt headed that direction?

Christmas

2010-12-27T12:34:00.000-08:00

We had a terrific Christmas! This was the first year that Katie would see a present and know that it needed to be opened, tearing at the wrapping paper! It was great to see the cognitive strides in "understanding what a present is" that we have not seen in the past.

Sure is loud around here!

2010-12-16T08:51:00.000-08:00

For about the last two weeks, Katie has been REALLY loud! Loud in a good way though, shrieking for the fun of it is my guess. We were at Swan Rehab last week where they see a lot of stroke victims and where Katie gets her treadmill therapy. They see mostly older people and not too many 4 year-olds, at least not when we are there. It's one big room that is divided in areas, but I could hear Katie all the way in the lobby - having a good time and letting everyone know - shrieking in delight! I heard someone say to her, "Let's use your inside voice."

So, I had a conference with Katie's teachers and therapists about her goals and I asked them if she seems to have been louder at school in the past few weeks, which they confirmed. One of the therapists said that it means her core is getting stronger, that kids can't get that loud until their core is strong enough. I think she also said something about her vocal cords maturing and her mouth muscles becoming stronger - maybe that was the school psychologist - but anyway, I guess what it comes down to is - all of this screaming is a really good sign! Paul and I may be wearing ear plugs soon, but it's all good!

A note today from Katie's school Speech Therapist

2010-12-03T10:40:00.000-08:00

"At circle time, Katie raised her hand when Miss Rhoda asked, "whose name starts with "K"? ( sign of K was given as only other cue) OMG!!!! Katie also participated in response by stomping her feet when another child asked for the whole class to stomp for that child as applause. No help was needed for Katie- she knew what to do."

Things Katie does like this simply amaze me! Guess it's time to start going over the alphabet more consistently at home!

A few updates

2010-11-30T12:56:00.000-08:00

Katie's tongue is not sticking out anymore. Her continous "tongue sticking out" phase lasted about two or three weeks, then went away. Then came back when she knocked out her two front teeth (for a few days) and now is gone, I think for good. Whew!

Katie the pirate! Note her tongue was sticking out - this was right after she knocked out her two front teeth.

Katie was in a wedding this past weekend! See if you can spot her in this video!

Katie is walking better - in this video she has on her braces and the SPIO (pants) underneath her regular pants - they give her extra support and help her balance.

SPIO

2010-11-16T12:03:00.000-08:00

I ordered a "SPIO" (Stabilizing Pressure Input Orthosis) for Katie. This is an undergarment that is similar to SPANX (for women, to hold in our cellulite!), or a girdle - if you can't visualize a SPANX. Katie's is a spandex type of material, and for her I got the pants only - which is worn under her regular pants. It is intentionally tight on her so that she receives input, and it should help her to know where her body is in space.

So I put it on her today for the first time, sent her to school, and I get a note home from her teacher that she took 5 or 6 steps today, that's a lot for this girl! This SPIO just may be worth the $100 that it cost! We'll see how it goes tomorrow at treadmil therapy - that should be a good test.

*The SPIO seems to be helping her - She walked to me at treadmill therapy and it was the most balanced I have ever seen her - about 6 steps! Then, I went to the school for a conference, and Katie's teacher showed me how far she had walked the day before, and I would guess it would have to be at least 10 steps! Her teacher said she pushed her walker aside, and walked over to where all the other kids were calling for her. (This SPIO is also really good for kids with autism - and a 90 day refund policy!) I think I made a good investment!

Katie on the local news!

2010-11-02T10:55:00.000-07:00

Check out Katie on the news last night! I find the "cookie eating scene" funny because she was a bit fussy and I kept giving her food to keep her from yelling - didn't realize she'd have a close up with a mouthful of cookies / crumbs! That's my girl!

ABC 15 News

Comparison in walking

2010-10-29T13:44:00.000-07:00

Here are two videos showing the difference in Katie's walking ability from the first of August to mid-October. In the first video, (her first time on the treadmill) she needed help with foot placement. In the second video she is doing pretty darn good all by herself!

I had to video tape the second time from behind her so that she wouldn't get distracted! It's amazing to me how fast she is progressing, for Katie. I know that all of her therapies: Horse, OT, Speech and PT (treadmill) have helped her so much, along with the conductive education program she attended this summer. But honestly, from age 1 to 4 was slow progression for this child, and the last nine months we have seen incredible strides - since her transfusion.

Here is the link for SWAN Rehab where Katie does the treadmill therapy, in Phoenix. It is one of the best places in the country for stroke rehabilitation. http://www.swanrehab.com/

Here are some other links of the wonderful places locally (Phoenix mainly, and Tucson) that have helped Katie, a lot! Maybe they can help someone else!

http://www.swgaitway.org/ Conductive Education, Tucson
http://orthoticspecialists.com/ Orthotic Specialists (Leg Braces etc..)
http://www.headtotoetherapy.com/ OT, PT, Speech
http://www.bouldermountaintherapy.com/ Horse Therapy (plus they offer all other therapies)

http://www.fiestapeds.com/ PT, OT, Speech - we used to go here and they are great too!

At School

2010-10-22T13:27:00.000-07:00

This is a note I received today from Katie's speech therapist at school:

Katie had a really good day today. We were playing with the babies, and when I asked her to put a blanket on the baby, she chose between a bottle and the blanket, and then she covered up the baby and did the same for following directions for bottle. She also gave me a baby when asked. I later asked her which center she wanted to go to next and she looked towards the library then with assistance, she quickly made her way directly there using only my fingertips for assistance. She was able to push herself nearly straight up from a seated position in the vinyl padded furniture as well.

Not the same girl as last year.

Susie

I'm not surprised my lil' bookworm went straight for the library center! (Amy)

Oh no! (teeth)

2010-10-20T16:08:00.000-07:00

When we decided to put new floors in, we decided on wood rather than tile or stone because they are more "forgiving". Our last house had tile throughout and I felt like I always needed to have slippers on, otherwise my feet hurt. Well, these wood floors weren't forgiving enough to Katie's two front teeth - she fell face first right on them the other night and they took her two teeth right out. My poor girl cried for about an hour, but with the help of a lot of hugs, reading books with Daddy, and some Ibuprofen, she ended up having a good night sleep. The next day the dentist said it was as if she had had both teeth extracted, that there was nothing left in the sockets - which was good news. She also says she sees this about once a week - so that made me feel a little better, and the fact that they were her baby teeth was also good news. Bad news is that she will not have front teeth until her permanent ones come in which could be 3-4 years. However, I must say she is just as cute as ever, and she is feeling fine, so it's ok. And it will certainly help to make her Halloween costume a bit more authentic!

From one phase to the next

2010-10-18T08:50:00.000-07:00

Katie stopped with her tongue hanging out - it lasted about two weeks, but was immediately replaced with her hands in her mouth - constantly! Ugh! So I am just trying to keep her hands busy and will see how long this phase lasts. Always something!

Katie continues to improve a lot on walking more steadily, and the two sets of company we have had recently are amazed at her growth in the last few months (both with walking and physically, how tall she has grown). I will try to get some video of her at her next treadmill therapy because it really is something that needs to be seen - the difference from a few months ago.

One new thing Katie is doing is she will grab my finger, pull herself up, and pull me toward whatever it is she wants. She has done this a handful of times and the other day, Katie pulled her Grammie over to the doughnuts (which I should not be buying!) and was loving the doughnut! A definite sweet tooth.

Tongue

2010-09-30T11:49:00.000-07:00

Katie's tongue has been hanging out like this for about 10 days and it's driving me nuts!! I took her to see the pediatrician and I've asked all of her therapists about it and even the orthotist. I was told that kids do this when they have a sore throat but I am pretty sure this is not the case. The other idea is that because she is working so hard on walking right now, that other things might regress. And because the tongue is a big muscle, maybe she can't focus on keeping it in while also working on walking. Geez, I hope this is the case!

This happened once before over the summer for less than a week and then it just went away. I had forgotten all about it, until now!

If I had a margarita in hand I'd be toasting to the hope of this tongue phase being done with, soon!

Cheers!

Getting taller!

2010-09-23T12:41:00.000-07:00

Katie has always been a small fry for her age. Her weight recently made it on the charts however, her head size and height are still lingering somewhere else. Katie's gastroenterologist has had me add Carnation Instant Breakfast Drink to all of her milk for the past few years which has worked very well to put weight on her. I see now how adding weight when you're a kid (if you're underweight) causes you to grow.

Katie's (too short) braces she has outgrown

I took Katie to see her orthotist (who is in charge of her leg braces) in June. At that time he said they fit her well and that she probably would not need new ones until October or later. Well, all of a sudden last week she was outgrowing them! I noticed her toes were at the edge of the AFO (ankle foot orthosis) which is a molded boot that goes inside the brace. I took her in right away and Brett (the orthotist) seemed amazed at how quickly they didn't fit her anymore. He pointed out how the braces are really short on her because they come way down below her knee - where three months ago, that was not the case. He also said that when kids start walking, generally they really start growing, fast. Whoa - I guess!!!

With Katie spending the summer in Tucson at Conductive Education - walking so much, and now the treadmill therapy and walking with us at home, she is just sprouting up really fast! We always thought we'd have a tall girl since Paul is no shorty at 6'2" and I am 5'6". Keep growing Katie! I'd love to have you in size 4 pants by the time you are 5!

When we get her new braces in a few weeks I'll post a picture here next to this one to show how high up the braces really should be, and how much she has grown out of these ones.

Fingerpainting

2010-09-17T13:20:00.000-07:00

Katie has a few sensory issues like combing her hair, putting on her glasses (I have to sneak up from behind so she doesn't see them coming) and sometimes getting a bit messy. A note was sent home from school last year saying that she was not having a good time while they were trying to get a footprint for an art project, and she was doing some head butting and screaming. They suggested I do more of that type of thing with her. So, here she is having a good time with some finger paints. She really enjoyed it (although I didn't put her foot in it! ) and I was happy she transitioned well from painting to bathing.

Amazing Progress!

2010-09-04T14:50:00.000-07:00

Katie has no fear and keeps walking from the couch to me - usually 5 or 10 good steps (and sometimes not so good steps, but steps nonetheless!). It is incredible to see her confidence building and she is always reaching for our hands to take her for a walk around the house. Last night it was nice enough outside that we were able to walk her -each of us holding a hand- down to the end of the block, which is about 3 houses worth of walking. She did terrific! I can't beieve this is happening right before my eyes!

We are definitely headed in the right direction - take a look at this video!

10 steps plus a bit of dancing!

push

2010-08-30T08:44:00.000-07:00

Katie's new favorite thing is when Paul and I lay on the floor on our stomachs and she crawls all over us. She thinks its the greatest thing. I use this "technique" when she is crying because using us as a jungle gym always makes her happy and laugh. So lately Katie has started to push us when we are on the floor. She will push on us anywhere - arms, legs, back... and of course we roll over appropriately, so it is a big game to her. I wonder if "pushing" is listed as a milestone? It's all fine and dandy until at the gym the other day, I looked through the window into the playroom and saw her pushing on a sitting kid's back. His twin came over and took her hand off of him and scolded her.... ahhhh, 4 year olds!

Six months of Progress

2010-08-18T15:36:00.000-07:00

Katie is doing very well at a lot of things and today especially treadmill therapy. The first day she was on for six minutes two separate times. In between she walks in her walker (with supervision) and does other physical therapy types of things. Today she did a total of 15 minutes and her therapist seemed really impressed that she can stay on that long - she sure is improving in so many ways!

All in all, I think that the stem cell transfusion six months ago really played a part in having helped her to do a lot better at the things she was not so good at (leg strength, muscle control (arms), posture, pointing, focus) and speed up her progress in general. Although we have done a lot with her with all of her therapies (physical, occupational, speech, treadmill, horse) and conductive education, and she is at school 3 hours a day - I really think that without the stem cell transfusion, she wouldn't be as far along as she is. She is babbling a lot lately, wants to constantly be upright and walking, pointing at pictures and our noses, heads, ears, etc... even the teacher at school sent home a note saying that Katie has sure changed a lot. I think this is going to be one of the most progressive years for her. I hope by her 5th birthday in March that I can report that she is walking and maybe even talking!

Cord Blood News

2010-08-09T10:02:00.000-07:00

A good article someone sent me:
Cord Blood Info

Tucson "Conductive Education" at Gaitway

2010-08-08T13:40:00.000-07:00

** Apparently, I have mis-used the term "Conductive Education" by relating it to therapy, and have unintentionally ruffled some feathers in the Conductive Education World as I found bits of my blog on their website with some comments. The last thing I want to do is have wrong information out there, so I have changed the following post a bit in order not to term CE as "therapy". If you want to know what the definition of CE is please click here: CE Definition

We were just in Tucson at a terrific place called "Gaitway" which does Conductive Education. CE is mostly aimed to help kids with cerebral palsy and although Katie does not have CP, she qualified because of her many physical delays at age 4. We were there for 6 weeks and Katie went for 3 hours a day. It seems to have helped her a lot! She is walking better (with assistance!) and her feet/toes are staying flatter than they had been (she tended to curl her toes because it made her feel more stable) so the toes being less clenched is a very good thing.

At this summer program Katie got a lot of stretching and flexing mixed in with tons of walking in her walker, walking in between parallel bars, and up and down stairs and a ramp among other things. The conductors sing while doing the conductive education which seems to calm the kids and make them happy. Click on the link below to see a video that shows a bit of what they do.

Gaitway

While in Tucson we stayed at the Ronald McDonald House which was awesome! For not being at home, it was the next best thing. The staff there was absolutely wonderful and went out of their way for us and the other families. Katie ended up coming home with toys, books, and a few quilts- all which are donated to the house. Meals were brought in nightly by groups ranging from local businesses to churches to families to The Olive Garden, yum! No cooking for 6 weeks was a huge bonus for me! But I am sure I must have gained 10 pounds from all the cookies and brownies that I wasn't able to just "pass by" very often. The house is basically set up like a hotel where we had our own room and bath, with a tv, and small refrigerator. Laundry was free to do and there were computers, a play room, a tv area and a huge community kitchen stocked with food for anyone to use. I can't say enough good things about this place! We also met a lot of really nice people staying there too. It was really bittersweet leaving, but then not so much when I got a speeding ticket trying to get out of town.

Since we've been back we started Katie with treadmill therapy. I learned about it from one of the Moms at Gaitway in Tucson (thanks Susie!). Warren, Katie's therapist with the treadmill, said that Katie walked 12 minutes total (6 minutes two separate times within an hour) her first time, and said that was REALLY good!! So she will get this therapy 2 times a week along with her other therapies. I think we are on our way to walking! Here is Katie's first day on the treadmill:

dancing!

2010-08-02T14:20:00.000-07:00

Katie and I have been away for six weeks at a physical therapy camp, which I think really did her some good! I will post all about it and our stay at the Ronald McDonald House sometime this week. For now, I need to get some chores done... :( Here is a cute video!

the little things

2010-07-18T10:04:00.000-07:00

For us, the little things are huge. Just now Paul and I were trying to keep Katie entertained from a short distance (we were in the kitchen and Katie was in the adjoining family room) while I made her an egg and Paul was fixing her highchair. So to keep her busy, Paul said, "Katie, where is your head?" and we both put our hands on our heads and she put her hands on her stomach. I said, "that's your tummy, where's your head?" And she put both hands on her head. We continued on with nose, and then tummy, and head again, and she did them all. She has never been able to find her own body parts until today (only other people's). It's not 100% consistent (I just asked her where her head was and she clapped!) but what a good start!

extensive therapy

2010-07-04T07:41:00.000-07:00

We recently had a family reunion in Estes Park, Co at the YMCA which I highly recommend - if you like your family that is! It was an awesome place with lots to do and we all stayed in an eight bedroom cabin which was very roomy. My cousin Michelle is an internal medicine doctor (who should be sending me and my husband a bill for all the moles she checked and questions about his recent vertigo etc...) and I asked her about my arms which have been bothering me lately. My upper left shoulder and right wrist have really been painful and I've never had anything kind of pain like this before. I've been pretty worried about it and was sure for the last month or so that I must have some terrible neurological disease. What a relief when she said, "It's because you hold Katie so much. It's tendonitis and will go away when you stop having to carry her everywhere." Ahhhhhhh.... I will be around to see her walk someday!

And speaking of walking, Katie is in a summer program where she gets three hours a day of "Conductive Education". Most of the kids in the program are more severely affected and cannot sit up or communicate, and are either really rigid or floppy. Katie is one of the three in class who can actually stand, with help. The first day I actually felt guilty because she can stand up. Isn't that silly?!

I am hoping this summer will get her on the road to walking. For one, so my debilitating neurological disease will go away - and of course I just plain want her walking! The program consists of a lot of flexing and stretching and rotating wrists and ankles etc... I am there acting as her aide and have a hard time keeping her laying down during the stretching as she prefers to sit up. I know this program has helped the other kids, many of who are in it year-round. One (who had brain trauma) could not hold his head up last year and he is doing that and more now. They take Katie and a few of the others who have more abilities and do other things with them (walking with walkers and through parallel bars etc...) so I am hoping to report back in a month that she is running relays! Just thinking positive...

Ohhhh!

2010-06-17T08:30:00.000-07:00

Back in January I posted "Lips!" where Katie kept pursing her lips tightly for several days... Well, for the last two days she keeps doing an "O" with her lips! What is this all about? No idea, but I would guess maybe she is gaining muscle tone in her face? I sure hope so, because the drool is back (off and on but ON a lot!) and four years of drool is... well, no carnival ride.

Please!

2010-06-06T11:56:00.000-07:00

I've been working on getting Katie to say "please" sign language style for a while, and she finally did it! Last night with some prompting, she did this sign several times to get her milk! Previously she had never been able to grasp "signing". Here's to sentences in our future! Cheers!

Standing Barefoot

2010-05-26T08:15:00.000-07:00

Yesterday I was sitting on the carpet next to Katie, who was standing and leaning against the couch, when all of the sudden Katie no longer needed the couch and was standing there (barefoot) on the carpet - all by herself. At the time I was on the phone with my sister, and we figured it was about 30 seconds that Katie had been standing. Normally I have her stand in her leg braces because I can easily put her feet in the right position and it's much more stable for her than her bare feet. So to have her standing there, balancing herself while barefoot and with no help at all from me, GOOD NEWS!

Buh-Bye SWASH!

2010-05-21T11:47:00.000-07:00

Katie has worn this SWASH (Sitting Walking And Standing Hip Orthosis) everyday for 3 hours a day at school for the past school year. This SWASH gives her a sense of knowing where her legs and hips are. It also cuts down on Katie scissoring her legs while walking and keeps her steps more balanced and not so high and all over the place. So, imagine my delight when we saw Brett the orthotist yesterday and he says, "I think she's walking as well without the SWASH as she is with it!" He was truly amazed at how well she has progressed over the year and even commented on her balance and focus also being so much better! I honestly think he was as excited as I was to see how far she has come.

Oh thank you SWASH for your much need help - but I think you'll be off to be recycled for someone else to use soon!

"Where's your frog?" and flower, and monkey...

2010-05-17T09:28:00.000-07:00

I think it would be wise for you all to buy stock in Carter's baby clothing because I am keeping them in business buying up all of their shirts with animals and flowers emblazoned on the front.

Katie now knows when I say, "Where is your frog?" what that means, and will grab her shirt and look at the frog (or whatever object is on it).

She also knows where Mommy's nose, mouth, eyes, ears, and hair are, and will touch them (sometimes with a startling pinch!) but does not understand where her own nose, mouth, etc... are, yet.

These are milestones to us! Maybe not in the guide book for toddlers, but for us - big cognitive happenings here at our house!

grah-ga!

2010-05-04T14:44:00.000-07:00

Katie has a new word to add to her current two (dada and momma) - "grah-ga!" According to dictionary.com, a grah-ga is: a thin, crisp biscuit - and when translated from baby to the english language it is a "cracker".

Katie's babysitter told us this past weekend that as soon as we left the house Katie said cracker three times consistently when she pulled out the box of Wheat Thins. Of course, Katie never talks much to us parents, but today she said her version of cracker to me after some prompting (bribing actually), and just now she said it with the physical therapist. Katie's diet may be cracker based today - I'll have to work on the words banana or meatloaf next to even out the food pyramid.

vision improving!

2010-04-27T10:13:00.000-07:00

I took Katie in for her yearly eye appointment and her vision has actually improved! Her new prescription is not as strong, and the doctor said that Katie has improved a lot as far as tracking objects and convergence. Convergence insuffiiency is a disorder that interferes with a person's ability to see, read, learn, and work at near (close distances).

We went to an eye doctor here in Phoenix a few years ago when Katie was about two because Katie's eyes would turn in occasionally (one or the other, not both at the same time). He suggested waiting on glasses and when I told this to my aunt in Tucson, I think her blood pressure must have shot through the roof! At the time she worked for "Vision Now" in Tucson. Vision Now does vision therapy - which is much more than just a regular eye exam. "Vision therapy is a type of physical therapy for the eyes and brain -- is a highly effective non-surgical treatment for many common visual problems such as lazy eye, crossed eyes, double vision, convergence insufficiency and some reading and learning disabilities. Many patients who have been told, "it's too late," or "you'll have to learn to live with it" have benefited from vision therapy."

They deal a lot with kids and maybe adults too who have reading problems - and it is a little known secret really, this vision therapy -that needs to get out. Vision therapy is important because it not only looks to see if a person can read the chart on the wall, it also looks at how a person sees and comprehends the information. Does the person see the words jumping around on the page as he reads and think that is how everyone sees a page? Vision therapy helped my 7th grade cousin go from a 3rd grade reading level to the 7th grade reading level in 7 months, and that is why my aunt got involved. Here is a link to the Vision Now website for more information:
http://www.optometrists.org/visionnow/index.html

Okay, that is my promo about the importance of vision therapy. Who knows, Katie may need it in the future when she is able to read - I'm just thankful I know about it! And I hope I might help someone else to know about it!

And so thankful for my aunt and those doctors who got Katie and I to Tucson so that Katie could have a very thorough check-up and get some glasses that are not only extremely cute, but help her immensely!

Core Strength

2010-04-26T13:06:00.000-07:00

I have been using this ball with Katie since she was about a year old. One exercise I did with her back then and for a few years was to set her on it on her stomach, and roll her a little bit to the left, then a little bit to the right, and she would automatically adjust herself - which helps to strengthen her core muscles.

We got this out the other day with the occupational therapist and she put Katie on it on her stomach, and Katie immediately rolled herself up to this sitting position. Barbara the therapist was thrilled to see her do this, and so easily.

Also noticing some changes in Katie were my dad and stepmom who came to visit us recently, it had been eight months since they had seen us. They both could not get over the changes they saw in Katie, commenting on her focus being so much better and how much more stable and alert she is. When they were leaving to go home, my dad said something like, "I feel really good leaving, knowing how much she has progressed in such a short time".

Crab crawl

2010-04-16T10:00:00.000-07:00

Katie still gets excited to walk around the house (with us holding her hands) even though she has a long way to go before she will be walking on her own. GOOD NEWS! I am so excited to say that Katie just got approved for a summer program where she will get 3 hours of physical therapy a day for 6 weeks! Right now we get one hour a week - so I am hoping this will get her walking! She seems to have the strength to walk, but her coordination and balance are off, and they will work on all of that.

Usually before walking comes crawling, and sometimes it doesn't come at all. I have learned that crawling is very important, "because of the use of alternating sides of the body (e.g., right arm and left leg, then vica versa), there is increase communication between the two sides of the brain thus enhancing learning and coordination. Another very significant aspect of crawling involves the integration of sensory input. Crawling provides the brain with what is quite possibly the best integrated sensory input that a child ever receives." (taken off the internet).

So here is Katie doing her "crab crawl" as her geneticist calls it - she's getting there, but I have not seen anything resembling a typical crawl out of her yet.

Katie crawling

Pincer grasp

2010-04-08T09:44:00.000-07:00

Taken off the internet: "Fine motor coordination of the hand progresses in a definite pattern. At 6-7 months the hand is used as a rake and objects are raked into the palm with the fingers. At 8-9 months the thumb and the radial fingers are used to grasp an object and smaller objects are picked up. At 10-12 months, the fine pincer grasp is developed. This enables an infant to pick up a small object between the distal thumb and index finger."

The pincer grasp is something we have been working with Katie on for years. We use a few different strategies and one of them is at breakfast, I put Lucky Charms cereal on her highchair tray while I get her breakfast ready. Because they are so small and she only wants the marshmallowy ones, she tends to use a pincer grasp most of the time (probably for the past year). However, this is not consistent with other foods and objects, and she still uses her whole hand sometimes to pick other things up.

So, in the last two days Katie keeps putting her hands in the air with a pincer grasp, not grasping at anything at all. Maybe she is telling us, "Look, I can do this, and I don't need to be bribed by that leprechaun cereal!"

Here are a few pictures of her pincing her fingers in the air. I know her occupational therapists will be thrilled! And maybe a little baffled?

Katie babbling, laughing, waving

2010-04-02T07:50:00.000-07:00

Of course a few days after I talk all about Katie not babbling much lately, here she is!

http://www.youtube.com/watch?v=bRrE8Z9us44

Missing Daddy

2010-03-25T11:09:00.000-07:00

Paul was gone on what he calls a "business" trip - you know, the mandatory four day golfing kind. The second night he was gone I put Katie to bed and she was just screaming and screaming, so I got her up. We were sitting on the couch and she was really upset. She looked at me and through her tears she said, "dada" about three times. This was the very first time she has shown me that she realized Paul had been gone, and was missing him. And he does go on a lot of trips - business, and not-so-much business. Definitely one more new thing for Katie!

Easter Bunny vs. rocks

2010-03-19T11:11:00.000-07:00

In all of her four years Katie has loved going to visit the Easter Bunny at the mall for a picture. It was usually a challenge getting her to look at the camera because she'd be gazing up at him in awe, and touching his chin. However, yesterday she wanted nothing to do with the bunny. She clung to me and just refused to get near him. I look at this as progress, getting a sense fear - definitely a step forward in my book! So, our Easter picture this year is of Katie playing in the rocks. I guess Mall Santa won't have much of a chance this year either.

Where did the blabbing go?

2010-03-17T11:11:00.000-07:00

I read our story on the ViaCord website again and I look through what I've written and I wonder if I have portrayed Katie as too much of an angel?! She definitely is 95% of the time, but that other 5%, oh, it can be stressful! To me the hardest part of all of her delays is the lack of communication. I have to guess at what she wants and what hurts, etc... we have had many trips to the pediatrician after Katie's scream-a-thons, with me in hopes of hearing she has an ear infection - because at least it's something we can make better! And if there is anyway to make her stop her flinging her head all around because she's mad or hurting, I'm all about it.  Thank God it's not an everyday occurence. If I had to choose between her walking and talking, it would be talking, no question.

I have a good feeling that eventually Katie will do both. It may be a few years but I really believe she has the potential to be a pretty typical child.  All of the therapists say that naturally, a child will accomplish the gross motor skills (walking) before the fine motor skills (talking). So the talking has taken a backseat, actually it's in the car behind us! And we are working furiously on walking, we walk her all over the house, and she has physical therapies that focus on that too.  Just this morning she had therapy and took two more steps, all on her own. Yaaaaaay Katie!

So, her speech has slowed a lot, she basically doesn't say anything except "dada" to us -er, to Paul lately, where months ago she was babbling up a storm and saying a few words occasionally.  My goal - to get her walking so that when she has that down, maybe she will say "milk" or "Barney" or "American Idol" (she loves that one too!).  All you parents who have little ones talking your ear off all day - you gotta love it! All the funny things they say - like my nephew, who was about 4 when asked what his favorite color was replied, "blonde". And my niece, who is 4 now and was recently at the neighbors and offered a pb&j sandwich and didn't want it, said she usually eats sushi for lunch (so not true!)

I would give up a whole lot for an ounce of blabbing. Here's to hoping funny stories are in my future!

Our story!

2010-03-11T07:51:00.000-08:00

Our story is on the ViaCord website! Click on the link below:

Our Story

Katie's feet

2010-03-10T09:43:00.000-08:00

This weekend at Katie's birthday party, my Aunt who has a background in both speech and vision therapy, was holding a balloon shaped like a bunny's head over Katie as she was laying on the floor on her back (Katie). My aunt said that Katie had her legs up in the air, so she told her to kick the bunny's ear, and Katie moved her foot to the bunny's ear and kicked it. She told her to do it again to another spot on the balloon, and again she moved her foot to the spot and kicked it. I think my girl is a lot smarter than she is letting on... she does seem to be working mostly on her feet and leg muscles lately, wanting to walk and pointing (with her feet!)

Last week, the speech therapist at school, Susie, sent me an email that said "Katie took 2 steps on her own to greet me this morning. She also used two hands together simultaneously to play in the sand and also played in the messy shaving cream". For Katie to take a few steps on her own is a big deal, I've seen it before but only with coaxing - and I think this was Katie's own initiative (correct me if I'm wrong, Susie!). She also took a step on her own towards my mom the day before, and that was her own action. For Katie to not be afraid to try to walk is huge! I think it can only get better from here. The sand and shaving cream are good for her sensory issues (she has a few, mainly hair combing, and she doesn't like it when I put lotion on her). The teacher at school said that Katie threw a big fit recently, throwing her head backwards etc.. when they tried to put her foot in paint to get a footprint for a card for me... guess we will be spending some time with fingerpaints (or maybe I should say foot paints!) and shaving cream.

Katie's 4! (video)

2010-03-09T09:13:00.000-08:00

It has been a busy few weeks! My mom and step-dad left yesterday, I took my sister to the airport this morning - between all the company we have had, my end of February birthday, and Katie's early March birthday, I can't remember if Paul and I even said "Happy Anniversary," on Feb 29th? But there wasn't a leap day this year, so... well, no it's not ok - I think I'll tell him when he comes home today, better late than never. Anyway, it feels like I've been living in a whirlwind and I have a lot of catching up to do on my blog. Below is a video of Katie on her birthday, ever the chocoholic! She just turned 4 - hard to believe. She finally enjoyed being a part of opening her presents which hasn't happened up until now, it was great to see her interested and picking and choosing the toys she liked best, and tossing the others aside! I will post more tomorrow about Katie when I have a bit more time, if I don't get some things done today (laundry, etc...) I might lose my mind.

http://www.youtube.com/my_videos_edit?ns=1&video_id=82X-EyUsOiE

Horse Therapy

2010-03-01T13:59:00.000-08:00

Katie started with horse therapy a year ago - in Oct 2008. Horse therapy helps to strengthen her core muscles, basically her abdominals and probably her back too. We go to Boulder Mountain Therapy in Mesa, and they do a lot of things with her on the horse, like having her reach for toys that are hanging in the trees or they throw a ball to her and she throws it back, etc... They work on all kinds of muscle groups with her on the horse. It has been really exciting to actually "see" her improvement. When she started this a year ago, she had to hang on to a handle, she tired out easily, and she had a harder time keeping her head from wobbling. Now, she can hold onto a doll rather than the handle, and they have her sit sideways on the horse for a while, which is supposed to be a lot a harder to do. Below are two videos, one from a year ago and one from about a month ago. You can see the difference in her balance and her head control. In the second video she is sitting sideways and holding a doll. Katie does horse therapy once a week from Oct to May.

2009
http://www.youtube.com/watch?v=HIFDmadD06s

2010
http://www.youtube.com/watch?v=QU6lHsWQp0g

Proprioception

2010-02-22T15:23:00.000-08:00

Proprioception: the ability to sense the position and location and orientation and movement of the body and its parts.

In Katie's case, she cannot tell where her body parts are in space (legs, arms, head, etc...) although it is getting much better. Leg braces help Katie with proprioception because when she feels the pressure from the braces on her legs, she can tell where they are in space. A year ago her legs were all over the place when walking - she would raise her knees too high and criss-cross her legs. The braces also help to keep her feet in the right position (she was standing on the top of her right foot a lot - picture below), and from criss-crossing. Once, when we were at the orthotists (Orthotic Specialists in AZ - Bret and Barb - you are the best!) Katie accidentally banged the back of her head against the wall, then she did it again, on purpose! Bret saw her do this and told me that kids with low tone tend to do that kind of thing because it lets them know where their head is in space - that they could "feel" their head. I know, I thought this was weird too! I was so glad to have someone recognize this and have some sort of reason for it. And it's the same story with her legs - probably more so than any other part of her body, I'm guessing. Bret along with Katie's physical therapists said the proprioception should get better as she starts to become more independent in walking. So...

Katie has been really wanting to walk! She keeps reaching out to us to take her hands and walk - and then she goes forward with determination! With her leg braces on or barefoot, we have noticed better walking balance and her legs aren't crossing anymore. She has her braces on most of the time, but when they are not on, I am seeing less of her standing on the top of her foot. Just about a month ago, we had a meeting with Katie's teacher and school therapists to discuss goals (she is in a preschool at the local public school in a program for kids with disabilites). They wanted to know what might coax her to want to walk across the room in her walker, because they weren't seeing much ambition - I told them M&Ms and puppets! Well, within days Katie was showing a desire to walk at home, which I had NEVER seen before. I'll have to ask about at school, maybe they never needed to bribe her! But this determination and wanting to walk is new, it probably started about three weeks ago, before that I had to be stocked up on cookies or chocolate.

Katie has a long way to go before she will be able to walk by herself. It seems to me that for the past two years she has been stuck in the same groove with very slow progress in walking, and now is finally making good breakthroughs physically, and also with her balance and coordination, that I can actually "see". All of these little advancements will eventually add up to one independent walking child named Katie, I just know it!

Green

2010-02-16T10:06:00.000-08:00

Two of Katie's therapists were here yesterday working together to get her to say "g" as in green. While I was running amok cleaning whatever I could in the hour they were here (it was President's Day, so Katie was home all day and I had not gotten a lot done), I heard them applauding her, and knew she must be doing something good! They were pointing out green things in books and green toys, and yes, I even heard Katie say the "guh" sound, and they both said that she said "gr" also. I was happy to count about five rounds of clapping! Katie doesn't say much, (around her parents anyway) and we really have to repeat a lot to get something out of her, or frighten her... not on purpose of course. The other day when our older dog had an accident in the house, I jumped up frantically to get the dog outside, and I must have scared Katie because she was somewhat screaming, "Momma! Momma! Momma!" It was great!! Too bad the dog had to poo in the house to get her to refer to me. Oh, and there was the time I dropped a glass bowl...

I don't think this "g" sound accomplishment is directly related to the transfusion, as she was already saying some sounds and a few words. However, used in conjunction with referring to a certain object consistently, is a bit new. I will put updates on here of things she does that probably would have come naturally anyway, because it's still progression!

Cadence (Cady) Smith

2010-02-12T07:25:00.000-08:00

Another little girl, Cady Smith, had this same procedure done in July 09, and they haven't seen quite the results they had hoped for. So please send some prayers to Cady and her family for some good results! Go Cady, we are rooting for you!

And thank you to Cady's mom for sharing her experience with me and letting me post this information!

http://www.cadyscause.blogspot.com/

pointing

2010-02-11T07:17:00.000-08:00

I read books to Katie constantly, it is one of her favorite activities. She has been good at turning the pages for quite some time, and before her transfusion, she started touching the page with her whole hand, but she has never pointed at anything, ever. Now, all of the sudden we are seeing her point at the pictures on the pages! I will ask her to point to the cow or pig, etc... and I would say that she gets it right about 60% of the time. She still doesn't point at things that aren't in a book, but I think it must be coming!

Walking with walker

2010-02-10T10:42:00.000-08:00

Katie has actually initiated walking in the last week - which is totally new! She will reach out her arms to me and go "uuuuuuuuuuhhh!" and when we walk she has a big smile on her face! Here is a video from yesterday to click on and see her pushing her walker with her therapists:

http://www.youtube.com/watch?v=-HNaB4DIyf0

drool

2010-02-08T18:01:00.000-08:00

Wiping drool from Katie's face is almost like breathing for me. It's just something I do and don't think twice about, like a reflex.  Katie has drooled since she started teething, and hasn't stopped.  I always have some sort of a towel with me, or nearby in a drawer, and I would estimate that she drools enough to earn a face swipe about five times an hour. It's not terrible drool, but it's enough that it gets her shirt spotty, and I have to cover the couch with a blanket, just in case.

Well, the drool has almost stopped! Since the transfusion, we have noticed the drool getting less and less, and Katie still gets a face swiping occasionally, but I'd say it's about five times a day rather than an hour.  The drool has been a thorn in my side to deal with constantly for three years, so I am beyond thrilled to see it diminishing. I am no scientist, but I am sure this wonderful accomplishment must be related to her recent lip puckering (see past post) and although that only lasted three days - it must have made her mouth stronger resulting in less drool. Makes sense to me!

p.s.   After I wrote this last night, I was getting Katie ready for bed and she was just drooling like crazy. Her mouth was open a lot and it seemed like everything I had just written was just a fantasy. So, this morning when I got her out of bed, Paul says, "Look, she's doing the lip thing again", and sure enough she was puckering her lips, and no drool this morning. Whew! I'm not a liar. I guess this is a process that will unravel itself in time.

Sticker

2010-02-04T08:26:00.000-08:00

Katie has some sensory issues and brushing her hair is probably the thing I most dread everyday - so if you see us and she looks a bit unkempt, now you know why. Brushing her teeth is not fun either, sometimes I have to pin her down and sing a song. This is all a bit stressful for me, but I must say she does have some pearly whites through my efforts, and no cavities!

Those teeth - ugh! Does every kid have sharp little knives in their mouth at this age? I don't know if all kids tend to clamp down with their teeth and not let up, but my girl is a pro at this. So a few days ago, when she had something in her mouth and it wasn't lunch time, I knew it was probably not a good thing. I could see that it was a sticker she was chomping on. I had to think fast before she choked on it, so I stuck the end of a pen (the non-pen end) in her mouth so she couldn't take off my finger. Then I quickly swiped out the sticker, and wha la, no choking hazard anymore, just a screaming kid. I can't wait for the day when Katie stops putting things in her mouth and lets me brush her hair. These are big goals for me for her, and I'll be sure to let you know when it happens.

Prevacid

2010-02-02T09:51:00.000-08:00

Spit up is not a fun topic, however, I must talk about it. Katie has taken Prevacid once a day for about two years, for reflux. If she doesn't take it in the morning, she spits up in the afternoon. We have both had many a shirt ruined because of it, let's just say it's not pretty. Having reflux also tends to hinder her appetite, so the Prevacid has been a good friend to us, her appetite, and our wardrobe!

When Katie had the flu recently for a week she hardly ate a thing, and I wasn't able to give her the Prevacid - but I noticed she hadn't spit up. So I haven't given it to her since (2 weeks), and now that she is over the flu, she is eating well and has only spit up once. I called the Dr. yesterday, and she said it was fine to keep her off of the Prevacid and see how she does without it. We expected Katie to outgrow the need for this medicine eventually, and I had in the past occasionally tried to take her off of it, but it always backfired. I am very hopeful the days of spit up are over, and the only downside would be that I lost my excuse for clothes shopping.

Stomp

2010-01-29T09:38:00.000-08:00

Just got an email that Katie (while sitting in circle time today at school) repeatedly stomped her feet when asked - three times in a row, this is just crazy! Really? My girl stomping on command three times in a row? We will be practicing this at home now, and I almost feel bad because I didn't know she could even do something like this. But instead of feeling bad, we will be excited and work on it with her and pretty soon she'll be stomping around this house like nobody's business! Go Katie, stomp away!

I am also seeing better focusing with Katie, more of her keeping her eye on an object rather than her usual handing me a book or toy and looking at me, not the object. Three therapists have noted this too, two at home and one at school - so she's definitely coming along with this! Now, I know that I am not at all an embellisher because I am basically holding back on telling about more improvements that I see until I see them more consistently. So, the whole controversy is would this all have happened naturally anyway, or is this due to the transfusion, which we will never really know - but I know!

speech therapist observations

2010-01-28T07:25:00.000-08:00

Katie attends a preschool class for kids with delays and disabilities at a local public school, and she just loves it. Her teacher and therapists at school know about the procedure she had, and they know I'd really appreciate it if they let me know of any changes they see in her. After two days back at school, her speech therapist emailed this to me, "She is holding her head up straight, seems to concentrate more on what group is doing, has made many vocalizations, and when she waves, she shows intent!!" I have also seen progress in these areas and must say she does have better posture, but this wasn't something I noticed until two different therapists mentioned it to me. She is definitely vocalizing more, although the other day when her OT therapist was here, Katie babbled A LOT more when I left the room. What's up with that? Maybe moms in general tend to "get the shaft", because I distinctly remember my sister telling me the story about her daughter throwing an absolute fit every time she changed her diaper. But then one day when daddy was going to change her diaper - little Sophie brought the diaper over, laid it flat on the floor, and then laid on top of it - probably with a smile on her face. It's just not fair.

Biting and Pinching

2010-01-25T07:39:00.000-08:00

For about a week after the transfusion Katie did not bite or pinch once, which was very unusual, and I was hoping this phase might be over. But she also had the flu that week and I wondered if the no biting and pinching was due to lack of energy. Well, turns out it must have been the lack of energy because she had a biting frenzy a few nights ago with poor dad, and pinched me so hard I now have a lovely scab on my neck. However, I must say she bites and pinches with gusto and a big smile on her face! I'm hoping that just means that she really puts her all into everything she does, and will someday be a big time lawyer or the next Katie Couric - I'm just trying to look on the bright side here. We do tell her "NO!", but I don't think she understands that she hurts us, literally. I know most kids do this stuff anyway but it's been going on at least a year, although she is doing it less often - good sign!

eggs anyone?

2010-01-22T09:53:00.000-08:00

I just had to add this video even though many of you have probably seen it already. Before the transfusion I was trying to document what Katie could and couldn't do - and thought I'd get her on video trying to get eggs on a fork and to her mouth - which obviously isn't one of her strengths! But I love this video and wanted to post for anyone who hasn't seen it. Thanks everyone for your comments - love them!

http://www.youtube.com/watch?v=no2Fdc-XiuQ

Lips!

2010-01-21T12:45:00.000-08:00

Katie has had the flu/cold for about a week and although we have seen some small changes - I am going to wait to comment about those until she is feeling better. I want to make sure these changes are not just due to lack of energy. However, one change I am going to talk about is her lips!! Having low muscle tone affects Katie's face (muscles) so her mouth has always hung open a bit and she tends to drool. One of her doctors (probably the neurologist) told us that when her tone gets better we will see it in her face, I think he meant it might not be so round and filled out - that maybe she will get some cheekbones! So yesterday, one of Katie's caregivers was here and said to me, "Her face looks different, her lips are tighter!" I had noticed this too, but wanted to see if she would notice it without me saying anything to her. So I've included a few pictures: on the top left her "before" (actually taken right before the transfusion)and then two pictures I took today where you can see her pursing her lips. This is new to us, she has never tightened her lips like this before, and she keeps doing it!

Home from Duke!

2010-01-20T14:11:00.000-08:00

We got home from N.C. a week ago today and I must quote Dorothy, "There's no place like home!" Just
trying to get Katie to nap and sleep in a pak n' play was rough enough. But the most stressful part of the whole trip was the 4-hour flight there - I was just thankful that when I looked back after her many screams, the three men sitting directly behind us all had on headphones and their eyes closed! Whew!

The stem cell transfusion went extremely well. It was an outpatient procedure and took about three hours in total from putting in the IV to taking it out. Duke Medical Center is extraordinary - wonderful nurses and staff, and our doctor was exceptional.  And who could forget Tray, the music therapist. What a wonderful addition to have him and his guitar singing The Wheels on the Bus and many other songs, all while Katie was having the IV put in. She absolutely loved the music and singing, and even strummed his guitar a few times. Maybe a future Carly Simon in our midst?

My husband said to me the next day, "Could it have made her more loveable?"  That day she was constantly grabbing our arms and hugging them, and although a very affectionate little girl anyway - this was a bit more than usual.     Could it be?