Children’s Hospital…Another Roller Coaster Ride

Children's Hospital and our Roller Coaster Ride

These days we aren’t visiting Children’s so much so going to Birkley’s appointment the other week brought back so many memories. I had all the kids with me but thank goodness for the free child care they offer for siblings. At least I could unload one. The girls came with me and they called our name fairly quickly. But then what happens…we wait and wait as Birkley walks the long hallways. Almost thirty minutes later we start. The doctor is amazing so makes up for the time but we proceed to talk about new equipment since Birkley’s getting older and will be outgrowing all of her current equipment…new walker, possible wheelchair for the classroom, bath chair, stroller….Then the doctor moves on to say we should set up an eye appointment, Botox treatment again when we’re ready (which by the way has been a mess dealing with insurance for the last 2 years and still in waiting process from last treatment), and let’s see is that it?…K also an appointment with a ortho….(?)don’t even know the right term.

After the talk, Birk had a hip x-ray which had no idea we were doing (hope insurance helps but know we need to do it anyway). Then met back in the room to go over x-ray (been an hour now with Birkley and my 6 yr old). In the meantime, I’m looking at the time because Bode will have to be picked up soon because the day care closes at noon. X ray went well but then found out that we’ll be getting a new AFO type brace for Birkley’s left foot so the ortho tech was coming in too. Ok, now I have to get my son and come back. Picked up Bode then back to the room. The next doctor fitted Birk for her booty and then as this is going on, the Director of Operations for the department comes in because I was explaining to them what hell I’ve been through with the Botox treatments and dealing with insurance. After 2 hours, we were on our way out.

Phew, so glad we don’t do this every month or 2,3,4 times a month anymore. Makes me tired thinking about it. It can be so overwhelming, stressful, just emotionally exhausting and handling kids on top of it makes me think, no wonder I almost passed out a few times, why I lost weight, why I cried so much… It’s a process I will never forget.

After everything is said and done, I have to say that everyone we met with at Children’s Hospital were amazing. They were so helpful, friendly and sincerely were there to help. Overall, I look forward to not dealing with those type of appointments for a while but we’ll see. Have a feeling that won’t be the case.

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Just a Good Day – Yeah Summer!

Art by Devlin Logan (my 6 year old daughter) – not all finished:)

You know when someone is talking to you about your child and how you almost get a little choked up and have to hold back the tears?…Well today, I was almost there.

I signed Birkley up for this preschool summer camp at the Golden Rec Center here and I can’t even believe how amazing they have been from the start. To begin with, the woman in charge welcomed us with open arms and even had us meet with the teachers beforehand. She made is so easy and painless which we all know doesn’t happen very often.

Birkley started camp this past Tuesday and went again today. The setting is perfect for Birkley… bright, clean, easy access in her gait trainer to the little outside play area and just had everything set up to where Birkley could reach for things easier. Again, I do pay someone to be with Birkley while she’s there but the price is so reasonable that it works out great.

Today I walk in and one of the head teachers comes to talk to me about Birkley and how wonderful the past day of camp went. She said she had already made friends, that the kids loved her and she couldn’t believe how much Birkley focused on her, the other teachers and the kids. She laughed, sat a lot(her new thing), and was just telling me how charmed she was by her personality and her spark. “She just has that twinkle in her eye.” As she’s telling me this I’m thinking, wow, she doesn’t even know Birkley and I swear she was getting a little choked up inside which in turn almost made me burst into tears but I held back. What an amazing teacher to have shared all those thoughts and feelings about my daughter.

Thanks to all you wonderful teachers, parents, families and friends who really make a huge difference in our life. You don’t know how happy it makes me feel. Today, I had a great day and all because of people who really care.

* Yesterday was a good day too. At her other camp at Rocky Mountain Deaf School, her teachers said she once again sat a lot and she made 4 signs (sign language).

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Birkley Has Hit a Huge Milestone

Birkleys Huge Milestone
Birkley hit a huge milestone. Three weeks ago she started getting up on all fours(well almost), pushing up on her elbows more…just getting stronger overall. I can see it when she’s on the floor and can feel it when she wraps her arm around me to give me a hug. Think I’m addicted to physical therapy for Birkley now. Feel like sometimes it takes seeing big improvements to get ourselves motivated again to work with our children. Know it shouldn’t be that way but sometimes we need our kids to show us again and again that they CAN DO IT. Feel with Birkley, it’s every six months that something big happens and she surprises me every time.

Although I received lots of wonderful mother’s day gifts, this is definitely the best one. Can’t wait to see what happens next.

To all parents, remember to have patience although I know it’s easier said than done. These kids are amazing!

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What a Great Day!

So was just thinking back to one of our really fun days after school (we all know that 4-7 time frame is the hardest sometimes). A few girls who live down the street came over to help me just so we could go to the park. Was so nice. Just always makes me think of how much better our life could be if my daughter was walking. I always get jealous of other families because they most likely don’t even think twice about going to the park with their three kids but when one just turns 2 and the other can’t walk, it makes it difficult to do just the small things. Most of the time, their is no such thing as a last minute decision. Know a lot of us share this same situation. Either way, think we all need a few 12 year old’s to come to our rescue here and there. I feel so fortunate to have met this wonderful family and makes me so happy to see my kids happy and active. I try to do what I can but when I try to be a super mom and try to handle something by myself when I know I shouldn’t, I always get stressed, sweaty, and know other parents are looking at me like I’m a crazy woman. Plus the outing usually lasts about 15-20 minutes because I can’t handle it.

Thank you to all you families out there who reach out to help others. It makes our day and I couldn’t ask for a better gift. My family and kids thank you too.

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IEP coming up, ugh

Right now Birkley is in a testing phase to see if she is at the right school for her needs. How do we as parents know what’s best for our kids? People always say to trust your gut but I don’t know what mine is saying. Birkley is at the Rocky Mountain Deaf School here in the Golden area. I love it but know there is another school that she could possibly go to next year. Right now the concentration is communication and the other school is more focused on physical needs. Birkley needs help in both but feel like communication should be a big focus for her since she doesn’t speak, wears cochlear implants, and has motor delay. Seriously know that the tears will start flowing at this meeting. Anyone have any suggestions? What are your thoughts?

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Little Bit About Me

About Me and Special Living Today

First of all, before I start, have to tell you that I could not find one good picture of myself with the kids. Would think these kids are raising themselves. Anyway the best I could do. This picture is horrible of Birkley but was taken on her 4th birthday. I rented a bouncer because they are her favorite and loves to lay on them.

…………………….

To start, I have three kids. My oldest daughter Devlin is 6, my other daughter Birkley is 4, and my youngest boy Bode (pronounced Bow-dee) is 23 months. Yes, it is hard sometimes day to day because Birkley doesn’t walk, talk…and then there’s Bode who is still little so I need to watch out for him too. In other words life is nuts but who’s isn’t?

I do freelance web design and development from home when I’m not working on Special Living Today. Wish I could work more sometimes to escape the craziness but we all know how it goes with a child with special needs. Once you hire your sitter or nanny to come, it almost becomes more work. Birkley won’t eat(meaning take her bottle which consists of Carnation, fruit, rice cereal) for just anyone so as I’m running downstairs to try and hop on the computer and then I hear her crying in the background with frustration. Seriously, can I just get away for an hour? Half the time, my money is going to me too trying to get the two acquainted.

On my..ok not free time but off time maybe, I love to do anything artsy. On every holiday and any other day, my 6 year old and I are making crafts, painting,.. whatever. (well she’s making and I’m instructing a little while handling the other two). I finally cleared off our dining room table the other day because was covered with pom poms, paper, felt, and everything else you can think of.

I have a bachelor of fine arts degree and creating has been a love of mine ever since I was little. I remember helping my mom with crafts for sunday school, building mega dioramas for school… the list goes on.

I love fun clothes too. There isn’t any time for shopping but when I do get out to treat myself after a rough month of working and dealing with Birkley stuff, I love hitting the boutiques around town or the discount department stores like Nordstrom Rack. I love Free People clothes, yoga pants and great jeans. I love to find cool clothes but never buy anything that isn’t on sale or a great deal.

I’m a pretty fit person as I like to eat healthy and try to work out when I’m not exhausted. Usually consists of quick 20 minute workouts in the morning but at the most, 2 to 3 times a week before the kids get up. The rest of my workout is carrying a 25 lb. girl around. If I have a mega workout day with Birkley, don’t get me wrong, I have to grab a piece of chocolate, cookie, whatever with my glass of wine at the end of the night.

Needless to say, I’m a mom always pushing to do more. Think at times, I’m obsessed with trying to think of new inventive ideas for Birkley. How can we make our life better? How can we be more like a normal family and do things other families do? Feel like my head is spinning sometimes. I go to bed telling my husband, “why can’t I stop thinking?” Wish I could just let things go but guess that’s what drives me. Good thing and a bad thing.

At the end of the day, I have to say, thank god for coffee, beer, wine, my husbands amazing cooking and our great marriage.

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Teaching my daughter an important lesson

Tonight I had a big talk with my oldest daughter, Devlin, who is now in kindergarten. For the first time, we had some serious conversations. One of them brought up a valuable lesson for all of us parents to remember. She said, “my friend at school had surgery because she had cancer or maybe not but it goes away, comes back, then goes away again.” She kept going on about how she thinks she’s ok but still brings up a good point and something I learned along the way.

When going through stressful, crazy times with Birkley feel like I’m always saying, “uh, if you could just walk”, “what? I don’t know what you want”, and I could go on and on. Sometimes I have to remind myself that everyone has something they are dealing with and most of the time, you just can’t see it. Some have cancer, some have a disease that they have to monitor on a day to day basis and some just have family or marital problems. Although Birkley can be a ton of work, I have to remember that things could be worse. We have a wonderful, healthy family, georgeous kids, and my husband and I have a great relationship which I am so thankful for.

So to you new parents out there, remember you are not alone. Whether you know it or not, everyone has hardships out there and we just have to be grateful for all the things we do have. Life can be tough. Believe me, I’ve cried a ton but there is light at the end of the tunnel.

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When Does it End?

Swear I love everything about our life, well almost everything but does it ever get easier? Feel like every week I’m pushing for something, calling to set up appointments, checking with sitters to try and fit everything in. Ugh, so done sometimes.

Anyway if you notice I don’t post much on weekends it’s because I try to escape for a little. Try to ignore the fact that I have a daughter with special needs or just more needs than the rest of us. I mean who wants to research products, services, camps, etc. all the time? Not me. For once, I’d like to pretend that we are still a cool family who likes to have a few drinks, have dinner parties, go shopping and all the things we used to do before life got nuts.

If you feel the same, would love to hear from you. Know we all care about our kids but come on, can’t work on everything all the time. Can someone please put my daughters implants on, can someone walk her around the house because she is super antsy…Ahh

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Our kids, so precious

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At Children’s Hospital today and the whole drive(lots of snow so took over an hour), waiting process, and all the questions brought back so many memories. Thank goodness we were only there to do Botox injections to help with Birkley’s hypotonia.

The first eighteen months of Birkleys life, we were at the hospital for multiple blood tests, heart tests, GI tests, you name it, we did it. Then saw every department and doctor. Was exhausting, stressful, and the worst times of our lives. Don’t even know how many times I cried.

To all you parents trying to handle all this for the first time, it is so hard but you can do it. Just make sure to have several people in your life you can cry on and for me, praying constantly was a big part of my life at that time too. When you get to a point when you have no control, you need something. A prayer was my last hope.

I am now so thankful that Birkley is moving forward. She is so precious and of course will do what I can to make her better.

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