My little Rock Star...

As usual Jacob was a rock star and I couldn't be more proud of him. I don't have the results of the heart echo yet but Jacob did so well today that he didn't need to be sedated for his echo.

The day started off with Jake waking up in the hotel at 5am. I don't think he liked not being home in his own bed. We had to be at the hospital at 7:30. Luckily when we got there they took us right back. The nurse looked at me with wide eyes and asked about his breathing. I usually tell everyone right away that it is from his airway but sometimes I forget that it is not "Normal" because I am so used to it. Once I told her about his vocal cords and that it is his "Normal" she was very relieved. Most people hear his breathing and think that he is in respiratory distress. The look in their eyes is always pure fear. The anesthesiologist was nervous about sedating him because of his airway. He said that even though it is fine right now he could get into trouble with sedation and he recommended we at least try it without sedation which I was hoping for anyway. Sedation is always risky for hypoplasts but especially with Jacob's airway.

At first Jake was fussy but once the nurse put on Thomas the Tank Engine he was a happy camper. He fussed again when they needed to look at the arch (They have to do an ultrasound up by his neck). By then we were aloud to feed him so we bribed him with some food and he did great. I have to give the team at Cincinnati Children's props. They were great with him and we were out of there by 8:30am!  From now on I am going to insist we always try without sedation since he has done so well the past two times. We were home by 1pm. Both boys made me so proud and were so well behaved this trip (as always). I seriously have the best kids in the world.

Thank you everyone for all of the prayers. I will let you know when we get the results.

While at the hospital I dropped off a bunch of Sisters by Heart brochures for the them to give to new families facing this diagnosis. Sisters by Heart just celebrated its 1 year anniversary! We sent out 130 care packages in the past year. I am so proud to be a part of such an amazing group of women. I remember like it was yesterday how devastating the diagnosis is and how lost you feel. To be able to offer HOPE and SUPPORT to these families means so much to me.

If you haven't visited our site yet, please do.
www.sisters-by-heart.org

You can make a tax deductible donation by clicking here.
For only $35.00 You can ensure that a family somewhere in the United States receives practical items for the arrival of their medically fragile baby...and the incredible gift of HOPE. 


VOTE FOR A GREAT CAUSE

Last but not least I have a quick favor to ask. There is a great organization called Apps for children with special needs (A4cwsn).  A4cwsn provides iPads to children with special needs. They are trying to win a grant which will allow them to get 10 iPads for children who need them. They need your votes!

A4cwsn is running a contest to get votes. If we get 10 votes on our behalf then we will be entered into a drawing to win an iPad for Jacob. They will announce the contest winner on Thursday so we have one more day to get 10 votes on our behalf.  It only takes a few minutes and we would really appreciate your vote. iPads have been proven to be an amazing tool with kids with communication issues and this grant would change the lives of 10 families who really need it.

HOW TO VOTE 

1.Click on this link:
http://sunsuperdreams.com.au/dream/view/ipads-for-special-needs-children

2. Click the vote button on the right. It will ask for your first name and email address.

3. They will send you an email to verify you are a real person voting. Just click the link in the email to verify that you voted. Keep the email because if we win we need to prove we had 10 votes on our behalf.

4. VERY IMPORTANT: Click the link below and post on A4cwsn's facebook page that you voted on behalf of Kathy Baker. This is how they will tally how many votes are on our behalf.
https://www.facebook.com/a4cwsn

I promise it only takes a minute to do. They are in second place right now so please vote. I hope that we can get A4cwsn enough votes to win this Grant. They are so good to so many people and they deserve it!

Merry Christmas to everyone! I will let you know when I get Jacob's echo results. Thank you again for all of the continued support for our amazing baby boy.

Headed to Cincinnati

We are headed to Cincinnati today. Jacob will have a sedated heart echo tomorrow to check his heart function. If everything looks good then he can wait until April for his airway reconstruction surgery.

Please send up a prayer that everything looks good. It is easy to forget that his anatomy is so different but when we go for an echo I can't help but get very nervous. Praying everything looks good!

Side Note: To make mommy worry even more Jacob has learned to climb and LOVES IT! Glad he hit this milestone but I am going crazy making sure he doesn't fall lol.

I will update when I can after we get back from Jake's echo.

A Christmas Wish...

Merry Christmas to all of our blog friends!

Jacob has an echo scheduled in Cincinnati on December 20th. Please pray that everything looks good! I always get so worked up when I take Jake for an echo. It is so easy to forget that he has half of a heart because he looks so good. When he goes for an echo the fear takes over. I know he looks amazing so I am praying that everything looks great but it is still nerve racking. We are going to make sure that his heart function is still not being affected by his breathing. If it is then we would have to move up his airway surgery. It will be a quick trip, the boys, my mom and I will go up Monday night and come home after he wakes up from the sedation on Tuesday.

The boys are super excited for Santa to come. Jacob is loving the Christmas tree. We have no more ornaments on the bottom of the tree. Between Jake and the cats they have all fallen off and I put them at the top. Aidan keeps talking to Santa out loud which is hilarious. I told him that Santa is always watching so if he doesn't listen or does something that he thinks Santa would be upset about, he looks to the sky and yells "SORRY SANTA" lol. Love this time of year because Santa is my back up. I didn't get a picture of them with Santa this year. We don't want to bring Jake to the mall right now and Aidan is too afraid to sit on Santa's lap. He did peak at him from afar but we couldn't get him anywhere near the big guy.

Jacob has started hugging Aidan and it is the sweetest thing. He used to push him away but now he walks up to him and gives him a big hug. Aidan LOVES it. I couldn't believe it but Jacob comes up to Aidan's chin now. He is getting so tall! He is now 24lbs 9ounces and 31" tall. He is in the 48th percentile for his weight which is AMAZING for a cardiac kid. I am so proud of our big guy.

My Christmas Wish ...

My Christmas wish it to be able to communicate with Jacob. He is still not talking but is coming along really well with learning American Sign Language. The whole family has been learning. He still gets frustrated with not being able to communicate but we are working with him a lot. He can now sign: sign, baby, more, all done, please, milk, play, boat, book. He wants to watch baby signing times all of the time.

I want to try and save up for an iPad for Jacob before April of next year. I have read so many studies on how iPads have helped children who are non-verbal. There are hundreds of apps out there to help children with speech development. It is a wonderful tool to help children communicate. Children who were completely non-verbal started speaking whole sentences after using the apps. Jacobs birth to three therapists think he would greatly benefit from having one. There are sites completely dedicated to apps that help children with disabilities. A really great one I have found is A4cwsn.com.

Jacob also is hospitalized for procedures and surgeries a few times a year. He has a HUGE fear of doctors and getting poked and prodded throughout his hospitalization. He has sensory issues as a result. The iPad would be an incredible tool to assist with his fear and anxiety during hospital stays and lend itself as a distraction during his most trying times. My ultimate hope is that Jake would be able to communicate with us using pictures or signs and hopefully words to tell us his needs or if he hurts. Jacob wants to communicate so badly and gets frustrated because he can't. I know that this would be an amazing tool to help him do that.

The problem is they are very expensive. We are going to use any Christmas money we get this year towards it. There is a website called Babies with iPads. They have a grant that specifically gives iPads to children with disabilities. I was going to apply and still may however they do not currently have any funding available.

If anyone knows of anywhere that is selling a used or referbished iPad please let us know. We really would love to be able to purchase one to help Jacob learn to communicate. You can email us at thebakertrio@gmail.com.

Thank you all so much for continuing to help and support our amazing little warrior. We hope everyone has a Very Merry Christmas! I will post updates about Jacob's heart echo after we get home from Cincinnati.