Possible autism and a feeding tube...

I had a progress meeting with Rachel's therapists last week. We've been doing therapy twice a week for about two months now. She is progressing well with the therapy. I was a little bit surprised because I was told she is likely on the autism spectrum. She was evaluted for autism once before almost two years ago, but not diagnosed. However, after talking about it and then reviewing the checklist, she could very well have an autism spectrum disorder. So they want me to get another evaulation done.

She has a referral now at Kaiser to get evaluated. Our first evaluation was done through the county program, so this will be the first time our medical insurance tests her. As usual with Kaiser, I'm not holding my breath that we'll get anywhere to get them to pay for any services. I'm kind of okay with that since we've been dealing with this for so long.

Another thing we discussed during the therapy meeting is getting Rachel on a feeding tube as soon as possible. Her GI doctor was going to wait a couple of months and see if Rach gained any weight back or started eating. Then she stopped accepting her iron supplement in apple juice.... which I was only able to get into her a few times anyway. Her health is quickly declining and has been over the past six months. I never wanted to consider a g-tube,  but she simply cannot keep going the way that she is. The GI doctor and the therapists both think getting her a g-tube now is needed. Usually kids start with an NG tube but since we are also dealing with sensory issues, a tube in her nose wouldn't fly! I'm supposed to hear from the scheduling nurse in the next couple of days and we should be getting the g-tube within 1-3 weeks. I'm thankful that she will be admitted to the hospital for a couple of days so that we can see how she takes it and see how she takes the feedings. I will, of course, be staying with her the whole time. I am really nervous about she's going to react to this, and I'm scared that I have to learn how to do all of her feedings and use the pumps and such. I know they won't discharge us until we know what we're doing though. It's just scary. I never thought she'd go this long without eating. I always thought she'd just start eating at least something. So yeah, a feeding tube isn't the ideal solution but I'm excited to be able to get some actual real nutrition into my little girl. I also can't help but be mad that Kaiser will pay for a g-tube that includes a hospital stay, but they say she doesn't need feeding therapy. It's ridiculous!

After we get settled in with the g-tube and such, we are going to start feeding therapy 4-5 times per week. Still not sure how the financial part of this will all work out, but we're going to make it happen. We're only going to do the daily therapy for about three weeks and then go back to twice per week depending on how things are going. If she gets an autism diagnosis, our insurance would be required to pay for more services. It would be nice but I'm not holding out hope for that. We've already been disappointed too many times.

Just had to get this all out tonight. Oh and I have to write down what Rachel said to me today. The girls and I were dancing around the living room while listening to the Little Mermaid soundtrack. Rach asked me for a milk bottle so I said.. "okay, just a minute." But then I was distracted when Sophia started dancing with me. So then Rachel said, " mommy, you go dance to the kitchen and get my milk." She totally cracked me up!

Returning to blog land

How did I let half of a year go by without at least posting something? I really do want to get back into it, so I am going to just write some random things to catch my blog up to speed.

Where did we leave off?

I had surgery at the end of January. It was rough and included being admitted to the hospital.... but the biopsy came back negative and it was not lymphoma. I did have some partial facial paralysis for a few months but I am happy to say that my smile and my left eye and eyebrow both look normal again. I was really starting to wonder there for a while though. I'm not too thrilled that my incision is still very visible on my neck but I suppose that will get better with more time. I'm just happy I am cancer free!

Rachel has been denied for feeding therapy from Kaiser Permanente three times now. The past 6 months have been the most stressful that we've had. She lost five pounds because her diet became even more limited. She cut out the Costco organic animal crackers and she quickly lost weight from it. We're now seeing a GI doctor and a dietician. Her pediatrician had suggested getting a feeding tube but the GI doctor is having us try an appetite stimulant and some more time instead. I'm so mad at Kaiser that I can't see straight. Every time we see a different doctor or therapist, we're told something different than the time before. I'm so sick of being told that SPD isn't a medical condition so they can't do anything for her. Her health is suffering.  Kaiser Permanente's motto is "thrive." What a load of crap! They will consider paying for a feeding tube but not feeding therapy since she isn't your typical case. It's becoming increasingly frustrating and I'm at my wit's end.

So we were forced to pay for therapy on our own. I have been wanting to take her to the Star Center in Colorado for over a year now. But then I found two therapists locally (well, an hour away) who have gone through the Star Center's mentorship program and they are awesome therapists. So we've been going to sensory based OT and feeding therapy for a couple of months now. Rachel has made some good progress. She even took a bite of a chewy sugar cookie and ate a peice a couple of weeks ago... without throwing up or gagging. So this is progress, and I feel like we have finally found the right therapy and therapists for her. I just couldn't justify paying to take her to the Star Center or being away from Morgan and Sophia for that long. It's not completely off of my radar just yet. I'm just hopeful that the therapists locally can help her. So far, I am so impressed with them. It's frustrating that we have to pay out of pocket for it, but it is what it is, and we're working it out.

School is out for summer. We had the girls' IEP meetings back in February when they turned 4. They will all stay in their current preschool/therapy programs until they start Kindergarten. I am very thankful that Sophia and Morgan's teacher is keeping them in her program. She didn't have to qualify them, but she did. Rachel will be in her current program as well. We are very blessed and all three girls have amazing teachers.

Wow.. how did it get to be midnight already? See... this is why I never blog. Anyway, just wanted to post a small update. I'm hoping to get back into posting more often. We have a busy summer planned and I'd like to document it.

No one should blog this late at night and on cold medicine!

I am so frustrated. I haven't been able to keep up here because....well.... I just haven't had the time..but mostly, I have not had the sanity.

In early November, I attended the national SPD Conference. It was hosted by the SPD experts from the Star Center. I also attended two parent luncheons during the conference where I was able to talk with these experts one on one about Rachel.

So trying to make this story short since I'm about to fall asleep...... I feel like Rachel really needs the Star Center's feeding therapy program. There are a couple of therapists locally that were trained by the Star Center but I kinda know deep down that Rachel needs the master. Her case is seriously a difficult one. At the conference, I met another mother who took her son to the Star Center and it changed that little boy's life. His feeding issues weren't nearly as severe as Rachel's but she got Kaiser to pay for the whole trip to Colorado. So that has been my mission lately. I've been making phone calls, sending emails, and filling out 30 page packets about Rachel's developmental history. Her pediatrician started the process for us to try to get outside therapy covered by Kaiser, but it's a long process and we're just getting started.

I'm just so frustrated because if I can't get some insurance help to cover all or part of this, I really don't know how we're going to come up with the thousands of dollars that it's going to cost. Then I think....oh my gosh... what if we spend thousands and take her to Denver and the therapy doesn't even help her. I don't think that will be the case but there are always the "what if's." But then, we gambled when we spent thousands on IVF.... that may not have worked and it did! It's just that now we have a family to support and don't have that kind of extra cash just laying around. This is our daughter's health we are talking about. I'm willing to do anything to help her so we have to make it work.

I'm just so frustrated. My child isn't eating. She's still drinking from a bottle because she can't drink milk out of cup because she literally freaks out because it's "not the same." And this isn't just a 3 year old normal meltdown. There is actually a real serious underlying issue. She will starve herself or go without the milk if it's not presented in the exact perfect way. That's why I hate when people say that a child will not starve themselves. That not true for these poor kids who suffer from SPD and feeding problems.

I think I'm just letting my stress level get to me. The kids have been sick and now I have the nasty cold bug too. Add that to the sleep deprivation from sick kids and you get an overly dramatic rant on my blog. 

And did I mention my own medical crap?! I have a lump on my parotid gland on my face. Had to have a ct scan for it which they found not only that lump but two nodules on my thyroid. I had a biopsy on the face lump which was benign, but could still possibly be an early sign of lymphoma and the only way to know for sure is by removing it and doing a biopsy on the whole thing. The thyroid nodules turned out to be fluid filled cysts and are fine right now. Just have to get checked by the endocrinologist every six months. But the face lump thing.... I have to undergo surgery at the end of January to have the lump and possibly my parotid gland removed. So I'm not exactly excited about having surgery on my face while I'm trying to get all this therapy stuff set up.

But you know.... I need to remember that these are first world problems. Okay, rant over! I'm going to go to sleep now and pretend I didn't write this.

Moving on... literally!

I would say that I don't know how I let almost three months go by without writing something here, but we have been busy.... oh so busy.

I've been waiting for it to be official before I said anything here. Last April (yes, April) we listed our house for sale. We listed it on a Thursday and had multiple offers by the end of the first weekend. It was crazy, but not as crazy as the last seven months have been while we waited for short sale approval from our bank. Yes, we did a short sale. We've been so frustrated over the past several years watching the value of our home go down, down, and then further down! We were over 50% under water. We had a fixed rate mortgage too, not one of those risky adjustable rate mortgages. Anyway, after pumping thousands into repairs for that house, we decided to let it go. We bought it before we had kids, and who knew that we'd have triplets, let alone triplets who all have special needs of some sort. It just wasn't the right home for the size of our family or the needs of our girls. It makes me sad just to think about it. I had so many hopes and dreams for that house....none that we were able to make a reality. We sure tried though.

So it ended up taking seven months, two denials, and lots of drama from the bank before they finally approved us. I'm very thankful that we were able to get out from under that size of a mortgage. We feel like we simply rented an overpriced home for six years, not to mention the thousands lost on repairs. It's a bit depressing to think about the money lost.....

We moved out a couple of weeks ago and closed escrow on the old house this past week. We found a great 3 bedroom, 2 bathroom house that has a living room, family room, plus a den, It's about 600 square feet less than what we had before, but it feels more spacious. It's also a one story. We were so sick of stairs....and sick of the girls falling down the stairs, which happened frequently. We stayed in the same school district so that the girls don't have to change their therapy/preschool programs. For that, we are thankful. Very thankful.

We do hope to buy again in a couple of years. We know the rules..... we need to wait at least two years before we can buy again after doing a short sale. We didn't want to go this route, but it felt like our only option to one day have the right home for our family. It was tough to leave all the memories at that house, but we're glad to know that one day, we can get enough bedrooms for the girls to each have their own. And we will never buy a two story house (and certainly not another tri-level) again!

And bonus... Now that we don't have that high mortgage anymore, we can afford some much needed therapy for the girls. That's going to be another post. (Star Center, Denver, CO...here we come!)

Now if only all of these boxes would unpack themselves. Moving with almost four year old (gasp!!!) triplets is your basic definition of insanity!

Back in the swing of things..

So I didn't mean to neglect the blog. Oh well, it happens. I guess we shall start back with some random thoughts, since all I have these days are well... random thoughts.

The girls are back in school. Rachel has been back for about a month, and Sophia and Morgan started back up a couple of weeks ago. I don't love their new schedule, but it is what it is. Rachel's is the same. She still goes four days a week. Sophia and Morgan go two days a week. Their class is a quick hour and a half though. They actually started in a two hour class with four year olds, but they weren't quite ready for that class yet. Their teacher placed them in it hoping it would work out, but it was too overwhelming. They still need more one on one attention so they are back in a smaller class with kids the same age. We're going to evaluate how they are doing at their next IEP in February.

Speaking of the IEP for them... I think Morgan and Sophia will still qualify for this speech therapy preschool program. It's a good thing, and well, a not so good thing. I really do love their teacher though and I know she has their best interest at heart.

Rachel is enjoying her class. It took her a few days before she would sit at the table and eat her snack while at school. I'm glad she warmed up to it. As far as feeding therapy, we aren't doing anything right now. I still haven't decided if we'll go back, or who we will go to if we decide to start therapy again. Nothing has changed. It's really hard watching your child eat so little. I feel like we've done everything we can to get her to eat. The best thing for her right now is to just let her be a kid. I need her receptive language skills to improve more so that we can talk about why she needs to eat. She just doesn't understand yet. In the meantime, I'm thankful for Pediasure and the Enfamil toddler formula that I've been able to mix into her milk. One day at a time... one day at a time!

It seems like this summer flew by. I can hardly believe it's already September. We did have fun though. We all spent a few weekend days up at Jenkinson Lake. The girls absolutely love nature and had so much fun. We discovered that Morgan is a water baby. She would stay in the water all day long if we let her. I wanted to go to Monterey again like we did last summer, but we just had too many other things going on. Plus, Bob and I were already lucky enough to  have a trip to Monterey last March with just the two of us!

At the beginning of August, I got to fly up to Portland and visit my cousin again. It was so awesome. I almost cried when I had to leave because I didn't realize just how much I missed her until I got to see her again. I just loved spending time with her and her family. I flew up on a Saturday morning and home on Monday morning. Thanks so much to my friend who gives me the free buddy passes. I was sweating bullets at the airport for my flight home though. Since the buddy pass is a stand by ticket, I have to wait to see if there is a seat on the plane. That morning, I got the very last seat on the plane and didn't know I'd get to even board until about five minutes before the flight was scheduled to leave. I can't wait to go up again soon!

And now I'm completely exhausted and it's way too late at night......

4th of July Parade

 The girls were in their first kiddie parade for the 4th of July. We had so much fun. Our family has been a part of this small town and a part of this parade for many years. I even used to roller skate with my sisters in it when I was a little girl. When we got the opportunity to participate this year, I wasn't going to pass it up.

The weekend before the parade, I drove up to my dad's house (he still lives in the town where the parade was taking place) to decorate the girls' choo choo wagon. I bought plastic table cloths and decorations from the dollar store to cover the orange, purple, and green wagon. I didn't know it would be such a project. It was a team effort to get it all dolled up. My dad, step-mom, and I spent over three hours before we were finished. I must say.... if there would have been a contest for the best decorated wagon, we totally would have won!!! I guess you can say I'm really proud of how it turned out.

We certainly attracted a lot of attention. The girls turned into the biggest attraction for sure! During the parade (and even after it), I had people asking me to stop so they could take a picture. Normally, I don't like it when people randomly take the girls' picture, but this time... of course I didn't mind! I think the girls loved all the attention. We got so many nice compliments and made everyone smile.

Check out my cuties!

Here we are hanging out in the park before it was time to line up for the parade.

I was so happy that my Grandma was there to see her great grandchildren. Our family has been a big part of this community for so many years, so I was proud to have my Grandmother get to show off her triplet great grandchildren to her friends.

We were even approached by the local newspaper after the parade. They wanted to take pictures and feature the girls. We made the front page! FRONT PAGE BABY! Oh yeah, this is one proud mommy!

(I got this picture from my friend's facebook page since she took it)

I was bummed that Bob wasn't able to be there with us. He had to work that day. (He started a new job the day before and couldn't take time off yet. - same job, the contract just changed to a new company.) 

We had so much fun being a part of this. Sophia has been wearing her parade dress almost every day since. She loves it!  The girls still talk about the parade, dressing up, and riding in the wagon. They had a blast! We will definitely be back for it next year! 

Feeding Therapy Friday... or um just catching up.

I'm not doing so great with the "Feeding Therapy Friday" updates like I wanted to. The truth is that I really hate feeding therapy. I'm usually mentally drained after each session..... Hmmm....Makes me wonder how Rachel feels.

I'm posting tonight because we actually had some huge progress happen during the June 1st therapy session. She apparently just decided that she was going to eat that day. That's right, I said EAT!

Julie started with the Gerber Yogurt Melts in different colors. She always eats those, so of course she picked each one up and ate them. Then Julie gave her freeze dried bananas. She handed her one and talked about how it's another circle food. To my surprise, she took a bite and ate it. Then she asked for more and ate another one. Then she ate a plain potato chip, baby mum mum crackers, and took a bite of a freeze dried mango. It was so awesome. I shed many happy tears and was practically jumping up and down watching her from the observation room. It was just so great to finally see progress!

Of course this progress happened on the day when I was going to tell Julie that we were going to take a break from feeding therapy for a while. I wasn't going to tell her that I've been really really frustrated and am looking at other options. Instead, I decided not to make that decision just yet.

I was nervous about whether or not Rachel would eat any of the new foods at home. She is refusing the the mango (I dont' blame her, dried mangos don't taste good to me either) and the potato chips. She is eating the freeze dried bananas and the mum mum crackers. I was nervous she might stop eating some of her other "go to" foods, but so thankful that it hasn't happened.

So with all of this said, I don't know what to do now. Yes, I am happy... no make that... thrilled that she is eating two more foods. The last session we did on the 8th pretty much sucked. She was back to not wanting anything to do with any of the foods offered. For now, we're going to keep her in this therapy at least through the end of this month. I have some big decisions to make.

Yesterday, we had the appointment with the BCBA at Kaiser. I'm not sure how I feel about him yet. He was able to get Rachel's attention for longer periods of time than I expected. She has a very short attention span, but he kept her interest. My brain is still processing the information I learned, and I'm going to take some time deciding whether I think he can help us. We've been through several therapists at this point. I'm going to take some time to pray about it and see where God leads us. I'll talk about this new option when my head is in a better place about it all.

For now, I'm going to celebrate the progress that she is starting to make.