Alisha feeding in San Ramon

Because My friend Julene went on a mission and because she was a very good companion to Melanie and because they stayed in touch over the years and because Melanie is a therapist that just so happens to have worked with some CdLS kiddos and because Melanie flew from Utah to go to a baby shower and later talked the night away with me. Line all that up with Melanie knowing and working with Krisi who lives in Utah also but flew out to teach a class in San Ramon. Melanie being so awesome that she tells Krisi that while she's in Ca she has to meet a friend of mine and being a good friend and krisi being awesome in her own right... She made extra time after a class she was teaching to talk with me and meet Alisha but more then that give us some really great ideas about what we can do to get Alisha off the feeding tube!!! Beyond all of that My friend Andrea took the day off work and called me Friday morning and asked when I was leaving and if she could come too!!! Are you kidding me she saved me!!!! She Played with Alisha so that I could focus on all of the things that were asked about things from Alisha's birth til now. My sister Jayna who is in town for a while was planning on going with me for a few weeks even when I didn't know for sure when or if I was really going to have a spot. It didn't matter she was just going to be there. Oh, and Andrea offered to drive her car with much better gas mileage and she switched Alisha's car seat too!!!! My Dad let me borrow his voice recorder because he knows about my "adult ADD" there is no way that I could take good enough notes even with out having to keep up my end of the conversation!!! My friend Heather and my Mom took shifts watching Mataya and Jeff who is so Da MAN!! .. took Mataya with him to the girls/ scout camp (separate camps people) fundraising auction with Skyler and they had a good time.

Sometimes people ask how I do it. Truly, never am I really doing it alone. I'm feeling so grateful for all of our friends and family they rotate turns with different things or just talk or do things with us and we have fun that alone is priceless!!! I love to just look at the line up of giving people that Heavenly Father has set us up with and that each of them can be blessed for that is wonderful. I'm just feeling loved.

I'll move on to the trip. I've never packed so "well" for a therapy session!!! I just really didn't know exactly what to expect. I went with the "Be prepared and ye shall not fear" approach. I'll spare you the list of things that I packed... I'll will say that it involved two car seats and three bags.. they were small..... LOL!!!!! Andrea made excellent time was an awesome tour guide she has family in the area and knew the location well. That was a huge stress reducer for me I got to skip the whole "suck it up soldier mode" coping thing... that's HUGE!!!!! We had about an hour to kill when we got there and had fun at this really great park we took some fun pictures to it was beautiful!! We've done different kinds of intensive therapy things before or new doctors and they ask tons of questions and they kinda end it with a couple of ideas maybe but mostly it's "Wow she's kind of a tricky little kiddo ... Hmmm..." I just know that this was going to be GREAT!!!!! Even when Krisi said "She's a tricky kiddo" (I'm not kidding I have it recorded remember..) I had no doubts that she was just beginning what she was going to say. Krisi spent almost two hours with us!! I LOVE her!!! I'll cut it down to she taught me how to do the "dry spoon technique" she said that is should be solid with how to accept a spoon the right way in about three days. I'm so excited!!!! Krisi also offered to have me video Alisha eating and email it to her and she could give me more information of things to do to get Alisha really eating!!! She also told me that we should probably get her on a low pain med that I'm not even going to try to spell because Alisha's tummy doesn't feel good so why would she eat? I'm soooooo condensing this it makes more sense they way she talked about it. She said that we should also have another... basically using an Xray to watch and time how long it takes Alisha's tummy to empty but not an upper GI..we haven't done an upper GI in a while. I'm also getting her back on an allergy med that we are using because it has the side effect of being an appetite enhancer. It can also be a great nap enhancer so I watch the dose on that closely and take the weekends off so it doesn't loose it's effectiveness. Krisi gave me the email for the famous Dr Hyman and told me about a very unique place in New Jersey that takes kids like Alisha on feeding tubes or other feeding problems and teaches them how to eat!!! Beyond that teaches the parents and other caregivers if they can come how to feed the child the same way the whole thing takes on average about a month. I would take Mataya with me too a lot of this stuff has been really hard on her she really misses her Mommy besides both girls would have more fun just being together and Skyler would enjoy some guy time with Dad. We figure that it would cost about $4,000 if we rented the apartment on the 9Th floor of the hospital it would save on transportation and I would feel safer not having to travel with the girls because I hear that it is not a great neighborhood at all. I would want to take the girls to see some things while we were there I would just need to figure a way to feel safe doing it. I have very little information at this point which is always the most scary part. There are two other parent recommend hotels but I haven't checked them out yet. The waiting list is also four to six months long. I haven't put us on the list yet but I figure I can see how much I can teach Alisha with Krisi's help until then. I'm so glad that Krisi had an aim with her questions so when we were done all the information was grouped so that she was able to categorize problem areas beyond that she has solutions for them!!!! That just doesn't happen often. My biggest regret is that I didn't have a picture taken of all of us including the awesome students who had great questions and a couple suggestions of their own. WOW!!!!! If you have read this far you must really love us kudos to you!!!!

Alisha is four!!! I will paint for therapy!!!

Alisha turned four yesterday!!! She is doing sooo awesome! officially two years without a hospital stay woooo hooooo!!!!! She has made such huge leaps forward. She has gained enough weight that her nutritionist said that for her body size she really doesn't want her to gain more weight for right now. That was a huge first!! She is currently 24.8 lbs and 35.5 inches tall. Her birthday was the first day that I gave her morning meds with about 90mls of apple juice to help keep her sugar up and took her to school. At school she ate about the same amount of GF bread as five sacrament pieces and 1/2 cup of water. I was excited and gave her about 4 or 5 Cheetos and she ate those too. I know they are not made of broccoli but if my girlie will eat them that's about where we are at this point. With the stuff that I put through her pump she's got to be about the top ten most healthy "eating" kids around. This weekend Janya Alisha and I are going to San Ramon to be seen by a hugely awesome feeding therapist (I think that's her official title). I find out today weather we can be seen on Friday or Saturday.
As for today, I'm putting a second coat of paint on a bookcase for Alisha's "Magic" therapist and delivering it on Friday depending on the feeding stuff in San Ramon. ( I've also painted a larger bookcase and her therapy room with plans to eventually paint her whole house!! I do this in trade for her woring on Alisha an extra time each week so she gets seen twice as much as what the school will pay for). I'm also finishing Women of the silk this months book club book. I might even run some laundry woooo hoooo!!! Consider yourselves caught up for now I will post about how the feeding therapy goes.
TTFN
Heather.

Wooooo Hoooooooo!!!!!

Alisha just peed on the floor... ;)
okay but it's exciting that she was DRY for THREE hrs TWENTY FIVE minutes!!!!!!!!
I won't tell anybody if you are dancing and cheering like I am!!!! Yea!!!

The following Monday...

Hi, I'm a bit behind but I think that I should also add that the following Monday I kept Mataya home because her class was on a field trip to a gym club.. Yeah, don't think so. I got a call from the school nurse saying that Skyler had hurt himself during P.E. I asked if they had a wheelchair that we could use to get him out the car. They didn't have one?!?!? Somebody needs to hop on Craigs List!! I still can't believe that there are no between choices.. life flight, rookie wagon or hop. I had to have him hop out to the van. It's been a few years since I have been able to carry him. Oh, I forgot to tell you that he fell, hurt his ankle, and heard it pop. Skyler's sensory system isn't typical. If he says that it doesn't hurt that much all that means it that I'm glad that he's not in pain but not that I can be really sure that he is really fine. I took him to the emergency room and it was a really bad sprain and he was on crutches for almost a week. He went to ym/yw with out them but regretted it the next day. He's still not walking in quite his normal way but he will get there in not long. The kinda funny part was that after we talked some more I found out that he was only doing the exercises before the run and he fell down. ;0) We laughed a little bit about that one.. We are doing much better. I'm taking Mataya to get her stitches out today.

We are also taking some very slow steps for potty training Alisha. We are doing it VERY VERY slowly..... as recommended by her SCOE teacher. At this point we are having her run around in her little panties and timing when she wets to see if her body can last long enough to make it worth it for her to go potty. So far this time has been one hour and fifteen minutes!! Normally she's right around an hour and five minutes or ten max!! Anyway, she breaks things down into such tiny steps that you can't help but be successful!! I guess it's good that she's like that.. It just goes against everything in me... LOOK there's the potty.. let's go already!!! Not that bad. I'll read stories and clear a few weeks so that we can be consistent but that is the very best that I would be able to do alone. She is really good and really smart. I believe that she knows what she is doing... I'm just ready to be DONE!!!! Something better hurry up because Alisha has started teasing me about her diapers... Yeah, if ya know me at all you'll know that I don't stand for that and it's time to get creative and get that FIXED!!! in short order!!! Next Sunday Skyler officially becomes a teacher. That is very neat and kinda weird at the same time. Every once in a while not only can I not believe that he is that old let alone us.. I can't believe that we have clothed, fed and generally supplied everything for him for that many years.. Can you picture the heap of everything that would take??? I can hardly envision it and I was there.. Anyway, I better go for now I have another closet to get to before I pick up Mataya.