Pictures

Here are a few glimpses of our last couple of weeks...

It seems like a big chunk of my day is spent feeding kids. We used to spend an arm and a leg on formula, but thankfully both of the kids are eating more cereal and pureed foods these days. This is a little easier on the budget, although it does take more time then the bottle. Ruby only drinks milk and then eats cereal, pureed vegis and fruits and even forked mashed bananas and nutrigrain bars. She is a long way from feeding herself, but I am glad she is making progress with the type of foods she can eat. I am sure speech therapy will also help her in this area. Charlie eats mostly formula, but he is doing great with cereal and a vegi or fruit twice a day. Here are the messy photos:





We are borrowing this fun tube from a friend (thanks Cindi!) It is a great place for Ruby to sit and Tiger loves it too :)


A couple of Saturdays ago, when it was rainy and cold, we decided to take the kids to the Holland Aquatic Center to see how they liked the water. They both seemed to really enjoy it, although they are a little young and only lasted about 30 minutes. It will be fun to go when Charlie is crawling around because they have a fun baby area that I think he will love.
Ruby's cheeks are a little chubby for the life jacket :)




Charlie still loves his excersaucer.


A few weeks ago the kids went in a friend's pool which was a perfect size for them (thanks Julie). Again, they loved the water! We didn't get any pictures of Charlie looking up because he kept staring down at the water. I think he was trying to figure out what it was.

Video

I ran across this video that was linked from a friend's blog (thanks Holly!). This is the orphanage Ruby lived in the first four months of her life. We visited it when we we were there. Wow, it is hard to imagine Ruby living there now; that seems like a lifetime ago...it makes me sad to think about her crying in a crib there with no mom or dad to comfort her. Tough stuff.

Click here for the video of Gelgela.

Therapy and Equipment

Once again the week has gotten away from me. Thankfully we had a little calmer week with appointments partially because we are winding down with therapy at Holland Rehab. We have decided to move Ruby to Mary Free Bed Rehabilitation Hospital for physical, occupational and speech therapy. Here they have a lot of experience working with brain injured kids and we were ready for a change for Ruby. I want her to get the best care she can possibly get. Next Thursday we have a 2 hour appointment there where they are going to evaluate her to see what she needs for PT and OT. The week after that we have another appointment made where they will evaluate her for speech. I am excited to have a fresh set of eyes take a look at her and make a plan to help her develop.

Another new development in Ruby's world is that we have ordered a bath chair and a stander for Ruby. The bath chair will allow me to get her in and out of the bath tub easier. Right now she is still bathing in a infant bath seat, but she is way to big for it. She can't hold her head up or sit up, so I can't just plop her in the tub. This chair will allow her to sit up in the bath and be safe. The stander somehow helps her be in a complete upright position for small periods throughout the day. This will be great for her bone growth, circulation, balance and strength. Mary Free Bed is going to have a rep from the medical company that makes the standers come to our appointment next week. He will try Ruby in several standers and make sure that she gets one that works for us. I am excited to get more equipment that will help her get strong, although my living room is starting to look like a therapy room :)

I am excited about the change to Mary Free Bed and I think it will be good for Ruby to get some more intense therapy, but I am a little overwhelmed by it all too. This means that we will be getting therapy probably 3 times a week in Grand Rapids (I think we will get OT, PT and Cranial all once a week-- at least for now-- we also have to fit speech in there somewhere). Then Early On will come to our house 2 times a week. This means 5 days of therapy for Ruby. This is what she needs to get stronger, but I am little worried that we won't have a life outside of therapy and medical appointments. I am also not exactly sure what I will do with Charlie all those times. It makes me nervous thinking about it all, but I am trying to stay positive and just take once day at a time. I read Ps. 62 this morning-- "My soul finds rest in God alone"... I am clinging to that this morning.

I would really appreciate your prayers for these changes for Ruby. Pray that new therapy brings incredible progress. Also pray that the seizures continue to stay away; her EEGs are still chaotic and I am always panicky that they will come back. I would love prayers of peace for Mark and I. We appreciate all of you!

I will post pictures of the equipment when we get it. I also have cute pictures of the kids in the pool that I will have to download soon.

Appointments

It has been a busy week, filled with appointments; I can't believe it's already Thursday! Here is a little run down from our week, if you are interested....

Monday we went to the pediatrician for a shot for Charlie and Ruby's 15 month well child visit. Ruby is growing like she should be; her weight is in the
75th percentile and her height is in the 25th :) Some of that weight I sure is left over from her steroid days, although she has dropped a few pounds since then. Every time we go in for her well visit they give me a little brochure saying what a normal child her age should be doing developmentally. I get that is their routine, but seriously, do they have to hand that to me when they know Ruby is developmentally delayed? Like I need to be reminded that she is behind. Frustrating...
Charlie was supposed to get a shot at the doctor's office, but I asked them to take a look at him first because he was really stuffed up and it turned out he had an ear infection in both ears. So, instead of the shot we got antibiotics. He is still very congested and he is coughing some, but he is acting like he feels a little better. He is such a good little guy that I really didn't know he wasn't feeling good.

Tuesday I met a couple friends at the park in the morning and then in the afternoon a representative from Children's Special Health Care of MI came to talk to me to explain the program and answer questions. Basically this is a government organization that helps families who have kids with special needs with extra costs they might incure that insurance won't pay for. It is a blessing to have access to a program like this.
Tuesday night Mark watched the kids while I got a haircut, and saw a few friends. Thanks Mark! It was good to get out.

Wednesday Ruby had an EEG at Spectrum Hospital in the morning and then at noon both kids had cranial sacral therapy in Cascade- which is Grand Rapids area also- so I just hung out over there most of the day. We don't know what the EEG looked like yet. Mark went to the EEG with me but then he had to go back to work, so I handled the kids by myself for the cranial appointment. I was pretty proud that it went so well. I fed and changed Charlie in the waiting room at the hospital and I fed and changed Ruby in the van. I ate a bagel at the hospital and then grabbed a diet Coke at McDonalds for the road. We got to our cranial appointment on time, but unfortunately had to wait an hour because they were so behind. But, that is okay because we love our cranial sacral therapist. He is really helping both of my kids so I am willing to wait for a long time for their adjustments :)

Today Ruby and I are going back to Grand Rapids for her appointment at the Gerber Development Center; they check up on her development, refer us for therapy, order equipment Ruby needs, update reports for insurance...etc. Again, we are thankful to live so close to this great resource and support. This afternoon Ruby has physical therapy too so she will be tired out after her appointments.

Tomorrow the only thing I have on the calendar is a walk and play date with friends so we are looking forward to that!

Thanks for being patient about the updates that are only coming about once a week!

Pictures

A few photos from the past week:

Quick Update

Just a quick post to say we are still here! Sorry we haven't posted in over a week.
We have been doing well over here. In the past week Charlie turned 6 months and Ruby turned 15 months! My babies are growing up :) Charlie rolled from his back to his stomach for the first time last week and Ruby continues to make progress with her arm movement. She is using them more then ever. They are also both eating solid foods better too. Charlie has rice cereal twice a day and he also has eaten carrots and sweet potatoes. Ruby is slowing graduating to fork mashed foods; she ate a whole banana today (of course it was mashed up). I am excited to see her doing well with this. 6 months ago she could hardly handle her bottle, even when it was thickened and now she is eating bananas and waffles!

I have to get going; we are headed for the pool this afternoon. Charlie has never been swimming before so I am excited to see how he likes it. I will post more later!

Cars

We were thinking we were going to sell the Toyota Camry, but we have decided to keep the Camry and sell the Vibe instead. So, sorry to those of you who contacted me about the Camry.

So, if anyone is interested in a red, 2004 Pontiac Vibe, let me know. It has been a great car for us, but we just outgrew it faster than we anticipated. It has 93,000 miles on it and it is in good shape. Email me at kelli10haken@yahoo.com if you want more info.

Minivans and More

After six months of squeezing two car seats, a double jogger, two diaper bags, multiple blankets, jackets, shoes...etc in our Pontiac Vibe, we took the plunge and bought a minivan! That's right, I have officially become a minivan mom and to be honest, I am very excited about it! We bought a light blue, 2004, Nissan Quest last night. It has so much room that I can easily fit the double jogger and several bags of groceries in the back with plenty of room to spare. It also has a side door and a trunk that opens with the push of a button; it was getting tough to hold Ruby and try to unlock and open the door at the same time in the Vibe. So, Mark will now be driving the Vibe to work and we are trying to find a good home for the Camry. If any of you know of someone who needs a '94 Toyota Camry for a good price let me know :)

Here is the new van:



A few other new things are going on around here--

This week marked 3 months of spasm freedom for Ruby and we are thrilled! We do see weird eye movement here and there and we are not sure if that is another seizure going on, but so far her EEGs have not caught another seizure. She continues to make very slow progress.Lately she has been eating solids with more texture, putting her hands in her mouth more often, lifting her arms above her head by herself and trying hard to roll over. She also smiles all the time, which I love, especially after how crabby she was on steroids. Sometimes I get very impatient with her development, but I am so thankful she continues to move forward. The cranial sacral therapy she gets really helps her. We have been going to see her cranial specialist every other week and for the next two months we are going everyweek. I am hopeful this means we will see even more improvement. Thanks for your continued prayers for her; we appreciate them.

Charlie is sitting up in his high chair and eating baby cereal twice a day. He is doing well with it and it will be nice to stop paying for so much formula soon! I also love that he is getting old enough to sit in his high chair and play with toys for a little while.


I got pigtails in Ruby's hair for the first time. Her hair wasn't quite long enough, but we got them in :) I am excited to try some cute things when her hair gets longer.


Charlie loves playing in his excersaucer. His feet hardly touch the platform, but he does pretty well balancing himself so he can play with the toys.


Ruby is enjoying moving around in the "Creepster Crawler" at physical therapy. It is an aparatus that supports her in the crawling position, but takes all the weight off her limbs until she gets stronger. I actually just bought one at ebay so we can use it at home, but it hasn't come yet. I am excited that she tries to move herself in this thing. She wants to be more mobile, but her lack of muscle strength really restricts her. Hopefully this piece of equipment will really help her to slowly gain the strength she needs.



A Few Smiles...