28!

We've reached a record high today of 28 pounds! Woohoo! We have never officially seen an actual 28 with Mia, so this is great news. She's been eating like a trooper and this was super encouraging to see that number on the scale. Thank you Lord!

The Ides of March

When did March 15th get here? Seriously, I just realized that Saint Patrick's day is on Saturday...in two days...shows you how crazy busy we have been. I got the pleasure of sitting in Mia's preschool class today. She was so excited that her Mama was coming to school with her. During one of her "centers" she was sitting across the table from me and every time she'd look at me, she'd get this sweet smile and wave at me. I ate it up, I won't deny it. The others kids really enjoyed having Mia's mom in class too, they all wanted to hold my hand whenever we had to walk somewhere. And they called me Mom because they didn't know what else to call me. Anything different than the routine is exciting.

We are struggling with where to put Mia next year because her cognitive abilities are so strong (Praise God!), but she still has physical limitations. So, I really wanted to see how she interacts with her peers and her teachers and the different activities she does at school. There wasn't anything major that made me think, "oh no", but I did notice how she struggled with many simple tasks, like hanging up her backpack, taking off her jacket...even transitioning between activities. She still has some uneasiness about physically maneuvering her body and so when all the kids got up to move to different activities, she just sort of stayed until everyone else had settled and then she could get herself where she needed to go. She did very well with listening and following instructions, she even was used to the routines, but physically she's really far behind.

I love how her teacher would ask her to read things because she knows that she can read. It was integrated so easily into everything they were doing and it didn't seem to phase the other kids at all. It was nice to see her being challenged academically since she's further along than her peers in that area.

Anyway, the plan is for me to observe the different kindergarten options for her and we've been thinking of some other plans ourselves...private preschool is a potential option along with homeschooling. One of our concerns about public kindergarten or transitional kindergarten is that all the classes are going to be "all day", so rather than getting out at 11:30, they will go until 1:30 or 2. It ends up taking up a huge portion of our day and trying to fit in all of our therapies after that, along with Calvin's afternoon nap, might be a struggle. So, that might mean she'd be pulled out of school more to do some of our private therapies...we are just sifting through all of this and processing what is best for her. We have an IEP meeting at the end of April and hopefully by then I will have been able to see some classes and get more info for next year.

LA with 2.

I ventured on my first trip by myself to LA with both children. Believe it or not, I have have never done this with both kids by myself...I have a great support system at home with grandparents and a husband who give of themselves all the time to make sure I don't have to go to LA by myself. I was completely unsure how it would go, but we purchased a double stroller a few weeks ago, so I knew I could belt them both in if necessary for my sanity. :)

It went amazingly great...thankfully we have a portable DVD player, so they were happy the entire way watching DVD's. And by the grace of God I remembered to pack snacks, so when we had to wait nearly 2 hours to see the doctor, they at least were not hungry. The office we visited is new, so I wasn't sure what the layout was going to be, but it worked great...they had a playroom with a single door that I could sit by and make sure that my children stayed in the playroom rather than chasing them endlessly around the waiting room. That in itself was a complete life saver. And we ate at Carl's Jr for lunch...the best part is that they bring you your food, so I didn't have to leave my children unattended to go get it...I know, really minor, but a total blessing for me. And then, they slept the whole way home...yay!

We saw Mia's orthopaedic surgeon. A few weeks ago our pediatrician noticed she might have mild scoliosis, so we got her x-rayed in town. It came back showing scoliosis, so we scheduled an appt with her orthopaedic doctor to see what the plan is. He said that because she has overall muscle weakness, this contributes to the curved spine, but her curvature is so mild that they wouldn't do anything with it right now. If it gets to 20 degrees, she's less than 10 by their assessment, then they would brace her. So, right now, we'll just continue to follow up every 6 months and monitor it. Which is a huge praise. We are praying that it will either stay the same or get better...we know that our God is powerful enough to straighten her spine, if need be.

Now we are just happy to be back home. :)

Our next doctor visit is the first week of April. We will be in San Francisco for Mia's nose surgery, so you can keep us in prayer that everything would go smoothly and that the outcome would be great. We'll keep you updated on that as we get closer.

Away

It was really nice to get away this weekend with the women in our church. It was even more wonderful to come home to my sweet family. And the best part was that they did great without me. I can't say I wasn't a little bit sad when I got home and the kids saw me and were like, oh hi mom...and then ran off to do their own thing, it was like I hadn't even went away. But that's a great thing.

After I got home on Sunday, Mia and I turned around and went to LA on Monday to see her neurologist. She's doing great and we are just going to maintain what we've been doing, a very minor dose of keppra and we'll just keep monitoring her.

ABC's

Calvin had his 18 month check up today. He's doing great, still on the skinny side of things, but nothing that our pediatrician is worried about...especially since Calvin is such an active kid. His ear infection is looking much better, but he now has some wheezing when he breaths, so we started some albuterol treatments until that clears up.

Calvin has clearly developed a love for the ABC's like his sister. He really had no choice though, since most everywhere you look in our house there are ABC's. On the fridge, on the wall, foam letters for the bath, puzzles, books...they are everywhere. He has started to since the Alphabet song and it is so adorable. He doesn't get everything right, but you can clearly hear the tune and the rhythm. The best part is watching him bebop his head and attempt to dance...but, unfortunately, he has taken up the dancing gene from his parents...and that isn't much. It's still really cute to watch.

Pray for Brad this weekend, he is going to be a single dad as I go away on a women's retreat with our church. This is my first leaving Calvin since he's been born. It's really hard for me to leave my babies...I know that the grandparents will be helping out and so that will make Mia super happy, I'm sure they'll have a great weekend.

Sick

We've been dealing with a sick child, Calvin has an ear infection, of which he started some antibiotics on Saturday, and he's just super congested...so that makes sleeping really really hard for him. Which makes sleeping really really hard for the mama. I don't know what it is, but when you are sick, you just want your mama. So, I've just felt overly needed these past few days, I will be so happy when he is better.

Mia has been doing great. She's been eating like a trooper, which is so great. On Saturday I weighed her and she's finally back to her highest point ever...so close to 28 pounds, but not quite there.

Brad's sister Rachel's family is in town for an extended stay. They have a 3 year old daughter, Joy, and the kids have been having a great time playing together. :)

An Update

We decided to do Mia's nose surgery in San Francisco at UCSF. We think it should be done at a major hospital with pediatric anesthesiologists. We were thinking of possibly redoing it at UCLA, however the doctor who did it before said she wouldn't do it without another CT of her head...that would be 4 CT's of Mia's head and she's only 4 years old, the doctor in San Francisco is ok with doing it without the CT scan. It is just so much radiation for her and we'd do it if it was medically necessary, but it doesn't appear to be necessary. So, the plan is for us to consult with the doctor the Monday before Easter and to then do the surgery the following Tuesday. We'll update you with more info as we get closer.

Mia's really been enjoying her water therapy. The therapist told us yesterday how she uses her left side and right side equally in the water, which is wonderful, so we are excited to see how this benefits her.

Please be praying for Mia, we found out that she might have the start of scoliosis. We are meeting with her orthopaedic surgeon in a few weeks to discuss the xray that shows some mild scoliosis. We are praying that it would resolve on its own...that she wouldn't need a brace, just so many things we'd rather not have her go through and we'd appreciate any prayers for her regarding this.

Daddy's Birthday

We celebrated Daddy's birthday and here are a few photos of the fun.

Disneyland and the Aquarium

Here are a few photos from our trip.

Cousins Napping...

Mickey!

The Aquarium

Ready to go home after a fun day!

Another ENT Visit

So, we ended up heading to LA today to meet the ENT who initially did Mia's surgery on her blocked nostril. We are feeling strongly that we need to do this at a major hospital with pediatric anesthesiologists...especially since we got several voices of concern about the local doctor that looked at Mia. She was happy to see Mia and said that in order to do the surgery she would need a very basic CT of her head done and that hopefully, since she is a little bigger, the result is a little better. Her thoughts for managing it afterwards were to watch and see how she does and if needed, do some nose dilations, similar to anal dilations...except they'd be done under general anesthesia, if need be. So, quite a bit to process, but ultimately, we want what's best for Mia. She didn't notice any fluid build up in Mia's ear, but she also said that fluid comes and goes. We feel strongly about not putting an ear tube in Mia's ear at the moment and waiting and seeing how she does after her nose surgery. Lots for us to process in the next few weeks, so please be praying for discernment as we sort things out.

This past weekend we got to take a special trip down to LA to visit the Long Beach Aquarium and...Disneyland! The kids had a blast, we met up with Brad's Aunt and Uncle and Cousins at Disneyland on Monday and just had such a great time. I need to load the pictures on the computer, but Calvin loved Mickey Mouse, we stood in line to take a picture and he was completely enamored the the big guy. Mia really enjoyed It's A Small World and Toon Town...they both also really liked the seals and sea lions at the Aquarium. It was nice to get away and do something fun. :) I will post some pictures here when I get a chance.

Horse and Water, Yes Please

Mia started back to MARE on Tuesday. It was a super cold, rainy, windy day...so they had a barn activity instead of riding horses. She had a blast, she got to groom Lady and feed her also, they had her doing really good activities with her hands and speech. She was really excited to be back.

Today she started with aquatic therapy. It's once a week and it's with her regular Occupational Therapist, whom she loves...so it's perfect. Brad got to take her because it was after work hours, this was really nice because he doesn't always get to see her therapy sessions. She loved being in the water and did not want to get out...they had her working on blowing bubbles in the water, clapping her hands under water, and some other activities. She's had a great two days of activities.

We started her new appetite medicine on Monday and yesterday she was so completely drugged that we decided to cut the dose in half and slowly work our way up. She's holding steady at 27 1/2 pounds, so we'll see how she does here...if the medicine makes a difference.

Calvin has started the tantrum phase of life...everything Mia has he wants and when he can't have it he will run around crying and then throw himself on the floor in his ultimate display of upset. I sure hope this stage passes quickly. :)

ENT visit

We met with a local ENT today who has a large amount of pediatric patients in his practice. He told us he does 1-2 surgeries a year for choanal atresia (Mia's blocked nostril), so we decided to get an opinion from him regarding a second surgery. He noticed that her right ear was opaque when he looked in and then he did a test to see the pressure in here and it's really low because she has quite a bit of fluid build up behind her eardrum from her blocked nostril. He said her hearing is at about 30% in that ear because of it. His recommendation is to do the surgery, but also to put in an ear tube in that ear to drain the fluid and to keep it drained for about 9 months. He would do the surgery at a local hospital and in talking with him, his knowledge of the procedure and what to aligns up with all the other doctors at major hospitals that we've talked to...so, pray for wisdom as we sort through whether or not to do this in Bakersfield. If we did do it here, it could be done in the next couple of weeks sometime, so it looks like it is a surgery we are closely approaching in the near future.

What A Big Boy!

This week I tried Calvin at the big table in a booster chair...he loves it. So far he's doing great eating off of a plate...I'm hoping he doesn't realize he can throw his plate on the floor. So far, so good.


And of course anything that sissy does, brother wants to be a part of...so if sissy is reading books on the potty, the brother is right there too.

Orange County

Today we made a trip to Children's Hospital Orange County, otherwise known as CHOC. We met with their GI doctor who heads up a very good feeding clinic. Mia has been doing well eating recently, but she's still not gaining weight...she's at almost 28 pounds which is where she was in August when I stopped the pediasure and cream. So, we just were hoping for some new insight and suggestions. We felt like it was worthwhile to have a fresh pair of eyes look at her and her history.

First off, he told us that we've done an amazing job getting her to where she is now...we know that is completely because of God and we are grateful that He has healed her to where she is now.

Second, he told us that for her height, she is on the skinny end of the scale, but not malnourished in any way and that yes, she is skinny, and could stand to gain a few more pounds, but she's actually within the realm of ok. That was encouraging for us to here.

Then he told us how sometimes the anti seizure medicine you are on, like keppra, can decrease appetite. Obviously the benefits of the medicine far outweigh the potential side effect of a decreased appetite, but that was interesting to know and realize might potentially be contributing to her lack of appetite.

He indicated that her bowel issues and slower emptying stomach might also be contributing along with a possibility that neurologically, she doesn't recognize the need to eat, etc.

His thought was to put her on some medicine to increase her appetite, try it out for 4-6 weeks and see if it makes any difference. There are two possibilities for this and so we'll be trying one out here over the next couple of weeks and if that doesn't work we'll try the other one.

He did feel like we should try to find a feeding therapist locally...ha. That it could be beneficial for her to see one just to rule out anything major that we might be missing, so we are going to look into that and see what we can find for her.

Needless to say, it was a long trip, but an encouraging trip. And we do praise God for how far our little one has come, she is our miracle.

Calvin

Calvin has grown up so much in the past month, he will often tell me "I do, I do" when I ask him if he wants to do a particular activity that he enjoys, like puzzles or coloring or going outside. Here's what we did today.

Damage Control

That's sometimes what I feel like my job description should be. I'm always calculating in my head whether or not what I'm allowing the kids to destroy is worth more or less time and energy than what I'm currently doing. Like this morning, I have a time that we need to leave the house so we can make it to school...we have a routine and for the most part it goes fairly smoothly. I also have goals, if I can get a load of laundry in before we leave the house, then it's almost done by the time I get back and I'm just that much further ahead. So, while I'm running around trying to do the things I would like to get done I'm constantly assessing what the kids are doing and whether or not it's helping or hurting my objectives...like Calvin taking the swiffer, I think, great...that will keep him preoccupied without much damage for a little while. But then I look up and Mia is taking off her gloves that we just put on so she can read a book...that's not going to help. Then I look over and Calvin is now taking off his socks that I just put on...oh no, that's not going to help either. Of course these are minor...thankfully we haven't had anything major, like me walking in on Mia with every single one of the books off the bookshelf and on the floor. Ok, you're probably thinking, that's not major, but for me...an overly anal neat freak, well, that is major.

I've also learned that tasks take longer when you have toddlers. And that's ok too because they always want to help and it's a learning experience for them. So, laundry that I could normally fold quickly, I might have to refold a couple of times while they are "helping" me. But they are such sweet helpers, that I do really enjoy those times...for the most part.

Just some quirky thoughts I was thinking about this morning. Not much else is new so that's good news for us.

Piano Lessons

So, we've decided to try Mia on some piano lessons because she loves music and is such a learner...she had her first one today and it went great. I think it will be really good for her on multiple levels...right now she's just learning about the different keys and she's using both hands to make them work, which is perfect. We'll see how it goes.

Calvin is quite a hands on guy these days. He can manipulate legos pretty well, we have some of the bigger ones and he can put them together and take them apart. Today, I realized that he can also buckle the safety restraints on the booster chairs for him and Mia. And it is a favorite pastime...go figure, he buckles, I unbuckle...he then excitedly buckles again. We could do this for hours. :) I'm just glad he doesn't know how to unbuckle yet.

Spring???

We've been having this amazing weather and it's only January...it makes me think that spring has arrived, but I know it's going to cool down here real soon and that this is just a little pocket of goodness. So, we've been making the most of it and trying to do more outside activities. We took the kids to the park and yesterday we were outside blowing bubbles. Calvin thought that was great fun.

Mia also had a second round of rollerskating yesterday and did great with it. This time just Mia and Daddy went, we'll take Calvin when he gets a bit bigger. And of course we are enjoying the extra long weekend, as Monday is a holiday...yay!!

Back in the swing of things...

School started this week, yay! It makes Mia very happy because she loves school and has a great time there. This also makes Calvin happy because he gets more Mommy time.

We've been making some contact with different surgeons for Mia's redo on her blocked nostril. We have some good leads and Brad was so smart in telling me to contact these places before we drive all the way there! We've spoken with a doctor in San Diego and another in San Francisco, right now the one in San Francisco is very promising, we are just going to look at a few more options before we make our final decision.

Calvin is slowly learning his letters (his sister makes sure he gets plenty of practice...). We have an S hanging near the changing table in his room and every time he sees it, he says, "ssssssss". I love it, I love watching him grow and develop and Mia does too, she especially loves hearing him try to say words. I love to watch her interact with him, she'll say, "Calvin, can you say blue...blue..." and then she'll get really excited when he says, "boo". It's fun. The simple things in life.

Rollerskating!

We took Mia and Calvin rollerskating today. There is a class at Skateland for kids under 7. Mia loved it. Of course she really wasn't skating yet because the back wheels were locked, but she had a blast. And it was really good for her to work on her balance and it requires a huge amount of strength, so I think we will be going back. Calvin had fun too, but we agreed that he might be a little too small, maybe when he is 2 it will be a better fit for him...besides, their smallest skates were way too big on him. Anyway, here are a couple photos.