TGIS

Today was the perfect 'do nothing day' to end a crazy week. I went back and looked at the calendar and Caleigh had 4 doctor appointments, got labs drawn and had all her normal therapy. I think the doctors appointments did me in.

Thursday we saw the new allergist. He seemed to care more than the other one and thinks we should do some skin testing. That appointment is in 2 weeks. I'm not really looking forward to it, but I am interested to see if there are allergens that we don't know about. I wish Elecare came in a skin test!

By Friday, we had an appointment with the Nephrologist. They are extremely thorough and kind, but goodness does it take forever! I'm not even joking...we pretty much have appointments with any kind of doctor you can think of and I can tell you that this office is the SLooooooowest EVER. Our appointment was at 2:30. At this point we know better, and don't even try to show up early. So I got there at 2:30....at 3:45 Caleigh and I were shown our room....another 20 minutes later in walks the doc. We could have stayed home and Caleigh could have had a nap before even leaving to get to this appointment. I thought about calling and checking in an hour before we get there. Do you think they will buy it? It wasn't just this time. It's every single time we go to this office. Plus they like to see Caleigh every month to two months. For Nothing! I hand them a sheet with blood pressures on it they either make changes to her meds or they don't. Our next appointment is in October (aka Flu & RSV season) so I'm pretty sure I'm just going to cancel and fax in the numbers. I refuse to sit in a waiting room for an hour and have Caleigh exposed to who knows what.

Which brings me to my next point...Flu and RSV. It's a little early for me to be germaphobe freaking out, but has anyone had a TV on lately? It's all they are talking about. Swine Flu this, Flu that, Shots, Hand Washing, Cough into your Elbow, Pandemic....It's exhausting just listening from another room much less watching their dramatic faces give the reports. Last month when we went to the Pulmonologist we asked about the swine flu vaccine. Our doc said not to worry about it and to make sure we get Caleigh the regular Flu shot, hibernate and she should be fine. Frankly I'm a little worried about giving her a vaccine that hasn't been around but a few months so I want to side with our doc. Hibernation is the plan, but it tends to be hindered by the many many therapies happening outside our home now. OT and Speech is in a clinic setting. Both are private so no other children will be around during Caleigh's session, but germs hang out for a long time and yes....can you tell...I'm freaking out. We wash our hands and use gel often and so do our therapists, but I have a mommy feeling that we won't make it through the winter as easily as we did last year. Can you believe that Caleigh didn't get sick at all last winter? We were so very lucky. Praying we have a repeat performance this year.

Our PT did Caleigh's evaluation this week. It tested Fine and Gross motor skills. They both came back at a 6 month level. Honestly this doesn't surprise me, and it doesn't bother me either. Caleigh has made tremendous gains in the last few months and we are extremely proud of her. Everyone continues to bring up the importance of development in the next two years. I'm feeling the pressure of this. I wonder if Caleigh knows?

So after all the appointments and germaphobia, we took the day off. I did laundry, and paid the bills while Caleigh played on the floor with no agenda or goals. We hung out in our pjs, cuddled and played all day. I cooked up some homemade applesauce and we sat down to have a few bites today. By this afternoon, Caleigh was wiggling on the floor to get to her beads. She still isn't happy about having to get to her toys by herself, but a quick reminder of "No Crying" seems to help the situation. What a wonderful relaxing day.

Tomorrow we are taking Caleigh fishing for the first time and Monday she has a hearing test scheduled.

Endo, Labs & Eyes

Yesterday was such a busy day! All the kids locally went back to school so the children's hospital was like an empty cave. There were doctors standing around talking and nurses doing the same. It was kinda weird. A day in the life of no sick kids...wouldn't that be nice?

Caleigh's endocrinologist appointment went well. There are many theories metabolically speaking, but I won't bore you with the details until we get the lab results back. No point in speculating when it might not be anything at all. They took blood for 14 different things and we should know the results in a week or two. We actually went to the lab at the children's hospital. There is a lady there that is 0/2 with Caleigh and the most un-gentle stick I've ever seen, and that's saying a lot because Caleigh has been stuck 100's of times. Eric asked for someone else and then we explained her track record with Caleigh. She got someone else. It's not unusual for the lab tech to miss a few times and then finally get a good vein, but to be rough on top of that is heartbreaking. It took two sticks this time and then we were on our way.

Eric and I took Caleigh to visit Kendall since we were already at the hospital. You know, a little support among friends :-) We hope she gets to come home soon!

We then went and grabbed a bite to eat and headed over to Jen's house to wait for our next appointment and to snuggle some babies! (Head over to her blog for an bonus picture of Caleigh with tiny Emma) We had a nice visit and then we were off to the eye doctor..

On the way to the appointment we ran into one of Caleigh's NICU nurses. It was so great to see her...plus she gives great directions!

At the eye doctor appointment we received good news. Caleigh's strabismus is better and he actually thinks that she only crosses her eyes when trying to focus up close, which is normal. As long as she isn't crossing her eyes trying to look far away we won't need any surgical intervention. I'm so glad we decided against the surgery back in December. Parents know best. So no glasses, no patching and just watch those beautiful eyes. Just made a spot check...Caleigh's watching Sesame Street and her eyes are looking great!

We drove home and crashed.

The Start of Her Voice

Today has been a nice relaxing day. The week was a little crazy with appointments but I guess that is something that won't be going away. So no need to dwell on it.

On Monday Eric, Caleigh and I took cookies up to the NICU for Caleigh's 2nd birthday. We did it last year too and I plan on doing it every year. The nurses and doctors are one of the main reasons Caleigh is still with us and for that we are forever grateful. Plus after spending an eternity in the NICU we feel like we made so many friends. Of course, me, the bad photographer, forgot to take pictures...maybe next year.

Thursday we took Caleigh to the neurologist. It was our 6 month check up. He was once again impressed with Caleigh's development. I asked about botox and we made an appointment at the CP clinic. We've been before but didn't like the doctor. So this time we will be seeing another doctor with hopefully a different opinion. The type of CP Caleigh has is difficult to treat and she needs a longer evaluation, not just 2 minutes. She isn't always spastic and she isn't always floppy. Athetoid is the type if you want to google it or maybe I will do a post on it some day. We talked about seizures at the appointment and pretty much there is still a big chance Caleigh could have them in the future, but her EEG that we did in the Spring showed great improvement over all the others. Still abnormal, but it always will be. There isn't a day that goes by that I don't think about seizures while watching Caleigh. We left the appointment with the choice to come back in 6 months or a year. We chose the year option. Now if only we could do that with GI!

Friday was a busy day. It started off with some civic duty regarding a 6 year old hanging out on the side of the street..alone. Once we cleared that situation we headed to the park and took a short walk. We came back home to our PT appointment. It was an important one. Our PT had set up an evaluation with her company Augmentative/Alternative Communication (AAC) person. This is the person to have when your kid can't talk. She evaluated Caleigh using her switches and then boosted "she totally gets it" "she knows." She made many suggestions including cause and effect computer games, a photo album of Caleigh's favorite things and a low tech communication device so that she can start making choices. It was a very informative appointment and I'm so glad we did it. We headed off to speech therapy where we got more suggestions.

I came home with my head spinning and I immediately went to the internet looking for devices and websites. The AAC lady is also sending me a list of resources and websites to look at. When we were getting all the suggestions I asked about funding. Who pays for all of this? The lady said that insurance and medicaid doesn't pay for the low tech devices and it is a pure struggle to get them to pay for the high tech computer like devices. If anyone out there has information on how to get them paid for please let me know! It was suggested that we look at Boardmaker and the software. This device combo is a little over $1000. There is also a SuperTalker which is similar to the Boardmaker but a few hundred dollars cheaper. It comes with a few less bells and whistles but generally they are the same. Our local school district uses the Boardmaker version. I'm going to make some calls on Monday to see about funding or loaners, but from what I understand it probably won't happen. I've searched for used devices on the internet with no success. Apparently there is some rule about being an authorized re-seller. How do families pay for this stuff, seriously? $1000 here $200 there...it's getting crazy! I'm so eager to get this for Caleigh and to get on the road to communicating with her. These devices could be her voice...why would so many people deny her of that including those that told me to "wait until she gets in school, they will teach her that." Of course we are still hoping and expecting Caleigh to speak to us using her mouth, but we need a path for education and a path to block any frustrations she may be having. It's just nerve racking and we can't seem to get these things for Caleigh fast enough. Any Thoughts?

On Monday, we have a 9am appointment with Endocrinology. Our Pedi came through and got us an appointment. Will be looking at a possible amino acid metabolic disorder that causes body odor, strong urine smell and weight gain. Caleigh is on 700 calories a day. That's nothing, normally developing kids her age are getting about 1200 calories per day. Caleigh's calories should be lower than the average kiddo, she isn't moving as much as the normal 2 year old. So she's on this diet and has been for about 5-6 months. The goal was to help Caleigh grow taller, but to maintain her weight. Her weight back then was 23 lbs. On Thursday Caleigh weighed 27lbs 11 ounces. She has grown longer, but not much. She continues to gain a pound every 2-3 weeks. So I'm interested to see what the doctor thinks.

We also have an appointment with the eye doctor. The last time we saw him was December. I think we went too long in between visits but scheduling was terrible. Back in December he wanted to do the strabismus surgery. We decided not to, mainly because he used the word "guess" about 3 times during the conversation referring to cutting the eye muscles. We'll see what he thinks this time around.

A lot to think about, and a lot on the to do list this week.

Viddy Diddy

Caleigh's new love is all things Cookie Monster. She thinks that blue ball of growling fun is hilarious!

Here is Caleigh using a BigMack switch. You can record anything on it and when you hit the button the recording plays back. We started out using this as 'GO'...to make her toys go. About 3 days into using it she hates it. Caleigh has been having some auditory sensory issues lately. If something is too loud she gets startled. So because she knows that the switch will click each time she presses it she has started to cry right before she clicks it. I'm pretty sure this is a form of toddler torture. She grimaces, turns away and then clicks the switch. In this video you can see the beginnings of the tension. This video was taken on Sunday. By Sunday night she wasn't having it anymore!

You can click on the videos to open them larger, directly in YouTube.

2nd Birthday Run-Down

Caleigh sporting her Better Than Normal princess crown. Melanie did a beyond wonderful job with every little detail! You can check out her son's blog here. Caleigh will be able to wear her crown for many years to come. I Love It!

Caleigh's birthday morning started off at 5am. Eric and I got up, loaded the van, showered, and poor Eric cut up fruit for about an hour. Caffeine was involved. We woke Caleigh up about 7:30 with a happy birthday song as she looked at us like we had lost our minds. We waited patiently for the morning diaper blow-out before getting her dressed up. We headed to the park and I snapped the smiley photo above on the way there.

Caleigh's party was early, 9am. This was to try to save everyone from the heat and to accommodate the all to important nap time. As you can see from the photos Caleigh didn't avoid a little birthday pout. The adorable lip gesture was during the happy birthday song. Caleigh hates group singing and slow songs. She usually breaks down within moments. In our house, slow songs are banned and don't even think of a quick rendition of silent night....she'll lose it. Although, I must admit that she looks awfully cute doing so. Caleigh didn't have but one taste of her dairy free cake and she quickly expressed her dislike for it. I thought it was pretty good though.

The party went well I think. I secretly hate that I can't talk to everyone all at once and I feel like I missed chatting with a bunch of people {sorry}. Caleigh tends to socially shut-down in crowds. She hides her head in a shoulder and doesn't come up until she feels it's safe. I thought she would do better this year, but no dice. She has been so 'talkative' and wide eyed at home that I had high hopes of her climbing out of her shell. After the party I questioned why we actually had it. Not that I regret it at all. It was fun and memorable and we got to share the day with family and friends, but birthday parties are for the children and when the birthday girl could care less.... what do you do? Maybe a few small parties at the house, maybe just a small family party? We will definitely reevaluate next year to make sure Caleigh will enjoy herself a little bit more.

We came home to a mess and a late nap. Caleigh slept for about an hour and then she was up for the rest of the afternoon. She was back to her normal happy self. We decided to end the day with a swim and a early bedtime.

It was a wonderful day. Our baby girl is 2. I'm going to start working on a slide show for her 2nd year. I haven't been quite on the ball like I was last year with that.

Thanks to everyone that came out and shared Caleigh's day, even if it was at the crack of dawn! We love you all.

Happy Birthday Caleigh!

My Sweet Caleigh,

Today you are two years old. An early two, but a big girl, nonetheless. These last two years have been a true miracle. Your life in itself is amazing. Your second year has had it’s ups and downs, but you have fought through with even more force and determination than you did your first. Mommy and Daddy are forever proud of you.

When I think of you, Caleigh, I think of everything I love about you. Your happiness despite all the prodding, pokes and therapies...it gives me strength. Your patience with life has given me patience with you. Your smile and giggle light up a room. You have touched so many souls without even knowing it. Your excited kicking when we announce “bath time” tickles my heart. The way you raise your arms when I say “up.” Your chubby thighs. Your recent attitude has given me a few extra grey hairs, but I am proud to know that you have that ‘tude.’ Your love of Top 40, and the Dirty Dancing sound track makes me thrilled to be your mommy. Your squeals of delight when your daddy tickles your neck, warms my soul. The way you give open mouth kisses and try to say 'I love you' with a garble of 3 syllables every night, satisfies my being. There are just too many to list. I love all your idiosyncrasies.

Of all the things you have accomplished this past year, a few stand out in my mind as I type this. Pushing up on your arms and holding your head up. Rolling from belly to back. Wiggle crawling. Giggling. Learning to love the swimming pool. Stopping TPN and getting your central line removed. Being seizure free. Sitting unassisted. Making choices. All of which make me smile. I know my list will continue to grow and grow with this next year to come.

Your life is just beginning.

Your journey is just now taking off.

May your 3^rd year be bliss.

May you be triumphant in all you desire.

Happy Birthday to my Big Girl.

Love you.

Mommy

Good Busy Day

Eric was working today and we had three appointments scheduled. So Caleigh and I went solo. I think it was successful. Here's how it played out...

This morning we went to a new OT place for an evaluation. We had an evaluation about 1.5 weeks ago with a home company, but I instantly knew the lady wasn't going to work for us. Mainly because everything I said went in one ear and out her other. We didn't click. So at the new place this morning I felt comfortable and Caleigh did well. The lady actually listened to me...the mom. What a novel idea.

We dashed over to the chiropractor and then to Caleigh's pediatrician. At the Pedi I apparently felt the need express my dissatisfaction with the run around we have been getting for the last two months. At the allergist, with the nutritionist, with the endocrinologist. If your kid isn't in an emergent situation and they have a chronic condition things move slow. I'm inpatient with Caleigh's care. I run at an ICU pace not so much an outpatient pace. So today and tomorrow she will be making personal calls to everyone to make sure we get in and get what Caleigh needs. I went into the appointment with a laundry list of metabolic disorders that could be causing the body odor. Most of which are checked during the newborn screening test right after birth. Caleigh's test came back abnormal, but it was blamed on TPN and prematurity. I couldn't remember if the test was done again and what exactly the results were. So it's worth testing again. I just love our Pedi. She's wonderful and caring and not afraid to put her foot down.

We came home and I called the 'new' allergist. Our Pedi referred us to another doctor and shockingly the appointment is only a 2 week wait. Amazing in new patient appointment land! Speaking of allergies....Caleigh's face is now broken out in a rash and she has tiny red dots all over her body. So after about 10-20 bites of cereal yesterday she broke out. They were there this morning so we didn't do anymore rice cereal today.

This afternoon, my mom and dad came by and watched Caleigh while I ran down the street to get a pedicure. It has been at least since January since I had one. Poor lady had to pull out the callus remover. Yuck! I caught myself several times with my jaw locked and teeth tight. I've been doing this a lot lately. Stress I guess. I didn't really think of anything while sitting there. I looked from the chandelier to the chairs across the way back to the chandelier. I'm such a visual person I tend to detail everything in my mind. Waste of time, but it was a wonderful break.

Only 1 more day until Caleigh's birthday!

Allergist, Rice Rice Baby

Yesterday, we took Caleigh to the allergist. I had pretty high hopes for this appointment. We haven't been doing any food since June. Elecare day in and day out....boring! I should really learn not to get too excited about a possible break through appointment solving all of Caleigh's eating and retching problems. Bottom line is that Caleigh is definitely allergic to cow's milk. So no dairy for her. The doctor thinks that the soy and peanut reactions were false positives on the test and they should be ok. He said to start giving her foods one by one, 5 days apart and wait for a reaction. We had started Caleigh on Zyrtec about 2 weeks ago when her environmental allergies were bad. She immediately felt better so he suggests sticking with it. No tests were done and then we went on our way. Basically, I could have taken Caleigh to our Pedi for that info, actually I had already got that info from both the Pedi and GI....but thanks!
Sometime in June we tried rice cereal through her button mixed with Elecare and Caleigh broke out in a rash within the hour. She used to eat rice cereal, but that was pre-milk allergy. It's pretty rare for someone to be allergic to rice so he suggested we try it again. Today Caleigh ate rice cereal by mouth twice. Once at speech this morning and then tonight for a mini-dinner before bath. She is doing really well eating by mouth and didn't gag or retch at all. As I was putting on her lotion after bath I noticed a few red bumps, so we will give it one more day to see if more develop.

Tomorrow, I am taking Caleigh to the Pedi for a body odor issue. We've been running around to different doctors for awhile on this one, but haven't had any answers yet. Let's just say that my sweet little girl smells like a 13 year old boy diving head first into puberty...it's just not right for a 2 year old.

Birthday party plans are coming together and at the same time stressing me out. Must breathe and relax...must breathe and relax and enjoy.

Foto Friday

Mimi decided I needed some bows...mom decided I need to wear them all at once!

Off to more therapy. One down two to go....

Up to My Neck

It's been days since I sat down and looked at my email and blogs.

Last Friday we had a terrible speech session. They have been getting worse as the weeks have gone on. Caleigh cried for an hour while our therapist tried to comfort her with no success. So we had the weekend off from therapies. It was nice, quiet even.

On Monday, Caleigh and I met up with Barbara from TherExtras for lunch. Her and her daughter were in town and asked to meet up. Jocelyn and Kendall joined us too. We had a nice time and it was fun to meet a new blog friend. Put a face with a name and put opinions and statements with a face! So glad we did it.

That afternoon our speech therapist came to our house to see if Caleigh's hate for speech therapy has to do with her, the location or a general dis-love for therapy. It was extremely nice of her to come to our house. She's not required by any means and has really gone above and beyond for Caleigh. I've heard a rumor she loves the complicated cases and I'm pretty sure Caleigh embraces that term. As I suspected Caleigh did wonderfully at home. Our therapist actually got to hear a lot of the sounds Caleigh has been making. So now I'm not that crazy parent that swears her child babbles when all she does for the therapist is cry! We gave a few bites of ice chips and she went on her way. Good session.

The next day we went to speech again and as soon as we walked in the door Caleigh began to cry. It was decided that day that there is something about the location causing a problem.

This morning we tried again. Bright and early 9am. We showed up and went around to the back entrance. Caleigh didn't seem phased. We also went to a different therapy room. She fussed and whined just a little, but actually did fairly well with plenty of puppet entertainment. We will be entering through the back from now on.

On Friday we will try again. Yes you read that right.....4 sessions of speech therapy this week. I think my head might fly off at any moment! I'm exhausted and honestly tired of speech and Caleigh's lack of interest in speech. Just for giggles, I threw in a music class, two sessions of PT, tried to secure our new OT and made a trip to the chiropractor. Very tired.

A few things that are going well....

I took a video of Caleigh sitting unassisted for 5 minutes the other day and when she was done sitting she reached out and made it to her belly effortlessly.

Caleigh has been wiggling on the floor more. Toys are such motivation.

Only 10 more days until our baby girl turns 2!

Birthday Invite

Hopefully I haven't missed anyone. Location hasn't been disclosed because, well that's just weird to put the exact time and place we will be somewhere, right? A little too much public knowledge!

We're enjoying our quite weekend at home. More Caleigh news soon!