No more night feeding!

So one the big things Amirah is going to try this week is not getting feed overnight. Until yesterday Amirah would be feed via her food pump all night long. We weaned to just 4 hours instead of 8, but last night I forgot to set my alarm to wake up and turn on her food pump. She did great overnight without being fed and after speaking with her nutrionist we have decided to try and stop overnight feeding. This is a big step and I am pretty excited for her.

Also, here is a video I made to day of Amirah. She is soooo close to crawling since coming off the vent during the day.

Trach Collar All Day!

Amirah is now off the vent 10-12 hours during the day!!!!! We are now set up to travel with no vent and we are soooooo excited!!!!

Here is a photo of how she looks with her new look :)

Now reporting from Austin!

So we have been here in Austin for almost 5 weeks. In so many ways it feels like we just got here (because basically we just did), but in a lot of other ways I can hardly remember what it was like before.

We found a great townhouse the first day we went looking. We have a great few off our back balcony of the Barton Creek Greenbelt. We are about 5 minutes away from downtown Austin and generally we are a short drive to lots of things. And as a bonus we are 2 1/2 miles from Andy's job! He generally comes home for lunch everyday and has the shortest commute of his life.

We haven't really started exploring the area too much but we are looking forward to experiencing all that Austin has to offer. Some of this can't happen until we have someone that can care for Amirah. And this, honestly, has been the worst part of moving. It's taken a little longer than we thought to get her nursing lined up and might not be able to get on nursing coverage until the second or third week of June :( We have place an add looking for an care giver that has some general knowledge of Amirah's needs, and we have had some good response. We are hoping that one of these people works out so that Andy and I can at least get out on our own a little bit.

I thought it might be a little harder to be home all day with Amirah with no help, but thankfully Amirah is doing so great that its really not that bad. I think the feelings I get by the end of the day are just the feelings stay at home parents just get. It is a help when Andy comes home for lunch because then I at least get some adult interaction in the middle of the day.

We now are working on ways to get a second car. We are so grateful that Andy does work so close to home, because on days when I really need the car I take him to and from and am able to have the car all day. I have yet to go to any Mommy's groups, but plan on attending some local ones very soon. Now that we are feeling more settled I am ready to meet more local people.

Amirah seems to be thriving! She is growing and discovering so many new things. She is completely off oxygen support while on the vent and is on the trach collar 8-10 hours a day. Her eating is slow going, but we hope to resume her therapies in June. She also now has 5 teeth and has sixth one about to pop through.

Its been such a change to move to Austin, but its still pretty exciting. My mother is coming for a visit in June and I am looking forward to having her here for the week.

I guess thats all for now. Next time I will post photo's.

We are moving!

We are moving to Austin, TX in TWO WEEKS!

We just found out yesterday. Gratefully Andy got a job. And not just any job, but a great job!

We have a TON to do in order to out of here in two weeks, but we are excited. And to be honest, in addition to being super excited, I am scared and a little sad too. I am very close with my family and if I think about it too much it makes me sad to think about living so far from them. But at the same time I am VERY excited about the future and leaving in a new place. And REALLY glad to be moving away from "winter".

As of right now we are planning to fly to Austin as a family on Sunday, April 17th. We don't have an apartment yet, but we are working on that and hopefully we will have one within the first week we arrive there.

That's all for now. I know we will be extremely busy for the next 2 weeks, but I might try and update some. In addition, I might just need to vent my feelings, and this seems like a good place to do it :)

We've been slacking on the posts....

We haven't updated the blog in FOREVER! Sorry about that. I would really like to update more and am going to make a better effort.

As for an Amirah update... those on Facebook probably know a lot of this....

About 2-3 weeks ago Amirah starting sitting on her own! She gets better and better everyday.

In February Amirah got her first TWO teeth!

In early March Amirah ate food via her mouth for the first time! She only eats about 5-10 spoons of yogurt at a time, but we work with her everyday to eat. Eating via her mouth is going to be a slow process, but it's so exciting the progress she has made.

As of March 14th Amirah has been approved to start trach collar trials. This means she will have a little bit of time everyday OFF the vent. We are waiting for delivery of the items we need for trach collar to arrive. We are hoping it arrives this afternoon. (After I wrote this the supplies arrived and now we are waiting for Amirah's Respiratory Therapist to arrive to set it up for us. I hope to post photo's of her on the trach collar later this afternoon!)

I can't brag enough about how proud we are of Amirah. She "talks" more and more everyday. She definetly says "Daddy" (so clear sometimes its shocking lol), and I have heard her say "Hi" a few times. She is a very intense little girl when she is introduced to new things, people, places etc.

As for me and Andy.... overall we extremely happy and content. We do have a few stresses right now. First, Andy has been out of work since November. He has been on numerous interviews, but we are still waiting for an offer. A surprising number of the positions have been canceled after the interview process do to cancellation of the projects. But we are positive something will happen soon. Things are extremely tight financially right now, but we truly know how blessed we are to have a safe, warm home, a baby who is thriving, family and friends that love and support us, and to have each other.

As for me... I have my moments. Most of the time I am just content playing with Amirah. But every once and a while I get overwhelmed when I think back over our past year. I have to remind myself to let go of the past and be in the present. It's funny, when I remember all that we went through last year I feel more upset than I did when I was actually going through. I guess it's a blessing in a way I didn't feel all that upset when it was going on. Both Andy and I have been told by numerous people who work with us and Amirah how much our attitudes have helped Amirah get to where she is today. For that I am extremely grateful.

Since the earthquake/tsunami of last week I have been reminded even more so about how blessed we are at the moment. I belong to a forum of other trach parents and trached people. One of the parents from that board lives in Japan. She and her family (husband, 2 year old trach son, and 6 month old baby) have been trying to get home to Canada since last week. It's frighten to think about all that she is having to deal with at the moment and my thoughts and prayers are with her and her family. You can read about and support them through Facebook, their page is "Help Baby Makeek Now".

That's all for me right now. Andy is going to add something now....

HELLOOOOOOO AMIRAH NATION!!! We have been gone for awhile haven't we! We know so many of you are our friends on facebook, so you are aware of a lot of the progress Amirah has made. As you can see, she is thriving, and we are so very, very grateful for that.

Jo is not the only one to get overwhelmed when think about the past year. Last night when we put her to bed, I flashed back to the day she was born, and how small and fragile she was. I realized that then, we never really panicked, and that we managed to handle it with a grace that (at least for me) is not that normal. I guess there really was a power looking out for us. I was hit with more of a feeling of panic last night then I was then.

The last few months over all have been great. It really is true what they say; things happen for a reason. While it has sucked and been very difficult financially the last few months, being home with Amirah and getting to be a part of her life has been a godsend and a blessing. I got to do what a lot of new fathers don't get to do. I was home with my baby when she first got home for the last few months. It truly has been a blessing being home and getting to be a part of her development.

Jo is amazing. The work she does is amazing. and if any guys are reading this.... If you haven't seen up close and personal the work a mother does, then you don't get to say crap. Its been wonderful to have this time with my family. And I am reminded all the time that as difficult as things has been, this has also been one of the happiest times of my life. It reminds me that no matter what, I am a very lucky man.

I will, try to help update this thing on a more frequent note. Between the job hunt, school, and the baby, its surprisingly busy at times.

Until next time...

Love is Always.

Amirah with Grandpa :)


Amirah with our cat Rodrigo


A photo from Amirah's 1st Birthday Party. Photo includes my parent's, all my siblings and their husbands or wives, and all off my nieces (the two oldest nieces are not here) and my only nephew :) It was amazing to have them all gathered together for the celebration of Amirah's birthday


Here is my new favorite shot. im still amazed when I look in a picture and I see so much of myself, but of Jo as well!

Happy Birthday Amirah!

Again, it has been too long since we updated here. Things here are are pretty typical for us. Amirah is growing (she weighed 19lbs 15oz yesterday at the pediatrician!), she is learning (she sits up for up to 1 minute on her own), she is "talking" more (she said Dada for the first time last Sunday), she is working on her oral skills (she sucked on a pacifier for 15 minutes last night - I was crying I was so happy for her). She amazes us everyday. She makes our hearts swell with love every moment. Andy and I are always saying to each other how happy and content we are (even though Andy is still out of work, neither of us have never been so happy in our lives).

All that being said, I am having moments of extreme sorrow. I start looking back at this last year and become overwhelmed. At times I can't even remember all the things, and at other times little details come rushing in. It's both hard and easy, and not very easy to put into words.

Andy here.

Well folks, as you can see above, Jo is having a hard time. Its a mixture of joy and sorrow for us. Its been such a crazy, tough, and in some cases LONG year. Jo and I feel as if our relationship, our faith, basically everything has been extremely tested. Yet, somehow, we made it through the year! I am happier then I have ever been. I have this beautiful, amazing little girl who makes me laugh every day, and just appreciate the little things. Its been a year of tears of sorrow, laughter and Joy. It's less then 14 minutes till midnight, and my baby girls birthday. I am looking at her and Jo snuggle giggle and laugh, and it fills my heart with joy.

Jo and I both know that there will be trials and tribulations down the road, and that not every day will be filled with ease. However, as you will see in the video that Jo and I are so happy to share with you, the key is not to focus on the past, but to "let it go" and look forward with joy and happiness in your heart to everything that is to come.

To all who read this: I hope this past year has brought you the joy, happiness pleasure, and yes, luck, that it has brought us. We had over 2000 photo's from the past year and had a hard time condensing a year of photo's into a 5 minute video. We think we captured it. Please, enjoy the video. We look forward to sharing this new year with you.

Love is Always,

Andy, Johanna and Amirah

Click below for the video ")
Amirah's 1st Year - A Year in a Life

Growing, growing, growing

It's been a month since we updated. While things have been busy here, they have also been kind of the same so updating seemed like it might be boring. But since it's been a while I figured I would.

Amirah is doing great! At her last doctor's appointment (over a week ago) she weighed 16 1/2 pounds! She's now almost 11 months old! We can't believe how fast this year went. She has been evaluated by early intervention and overall for a baby that was born at such a low birth weight, spent about 9 months in the hospital, and is dealing with some medical limitations she did great. They placed her between 3-6 months for a variety of development assessments, and considering all that I just mentioned, and her adjusted age at the time of the evaluations we were so happy.

We start her PT and OT therapies this week and I know that this will help her tremendously. Her goals for the next six months included sitting unassisted, increasing her muscle tone, getting her to more age appropriate play. We have a swallow study scheduled for this week to see if she is in danger of aspirating food taken by mouth, and if she is cleared by this test we plan on starting her with some speech and food therapies.

Amirah is a joy to be around. She is a happy content baby. She loves to "talk" to her dad and her nurses, to blow raspberries and to flash heart melting smiles.

We have had a few scary moments. These usually envlove her turning blue and needing to be give a few breaths with a ambu bag. One time this happened while we were at the doctor's office and the nurse who was in the room with us got scared, and called in the pulmonologist in the office that day. By the time he came in Andy and I had Amirah calmed down and back to her happy pink self. The doctor walked in and said "oh, its you guys....your fine."

It's hard to explain how our life is. There are days when its a breeze and days it seem over whelming, There also times when its a little sad. Sad that we can't just throw Amirah in the car and go visiting, or out to dinner or to the store. It takes a lot of planning and at least two people to get her packed up and out the door, and at least 2 people need to be in the car. The car is a WHOLE other story. But I will just leave it as our Ford Focus is barely big enough to have a baby in, let alone a baby with a ton of medical equipment.

I guess I am just blabbering away at this point. So I will stop now. But before I do I just want to add that we had a FABULOUS Thanksgiving with my parents. The house was over flowing with love and warmth and I wouldn't trade my life for any thing.