Hearing test

I thought I would update you all on Malachi's hearing test this past friday. They decided that there is fluid in both ears. No wonder he failed all of his hearing tests, it probablly sounds like he under water! The ENT wants to put tubes in. We are waiting to hear if they give him medical clearence before his heart surgery or if we will have to wait until after.

Things are going great! We went to our first Down syndrome support group this morning. It was great to meet other mom (and dads) who can relate. When people asked how old Malachi was their first response wasn't "wow he so tiny!" Cause they know, children with DS tend to be smaller! I think we will make life long friends here. I can't wait till the next meeting!

We hope you all have a GREAT weekend!

Today was a much better day! Im feeling "okay" with the new surgery date. I am worried about trying to keep Malachi healthy for an extra ten days, especially in the middle of January when the flu and cold are running rampent! I will do my best, and trust that God will keep him healthy. I talked to the surgons secritary today and finalized the plan. We will go to Chicago on the 29th at 11 am. They will get him all tested and ready to go for the next morning. They suspect we will be out of there in about 3 hours that day. After the tests we wil head to the Ronald McDonal house to check in and get "moved in." The morning of the 30th we have to be there between 5:30 and 6 am. There you have it. That is the plan, now lets all pray it doesn't change!!

We have a CRAZY week next week! Monday it is back to the peds office for a quick check up on Malachis sinus infection. Tuesday we have all of our therpy evaluations and an appoinment at WIC (we get it for his formula because he is still a ward of the state and I am not about to turn down free formula!) Wed. we will be in chicago all day. We have court in the morning and another cardio appt. in the afternoon. Yikes thats 5 appointments in 3 days!

Well I know there are some of you reading this blog out there and we would love to know who you are!! Please leave us a message and tell us your favorite thing about winter! We would love to get to know you better!

Surgery pushed back

Well...where to start! I just got a phone call from the office manager of Malachi's heart surgon. They were calling to see if we had gottne consent for Malachi's upcomming heart surgery. After talking for a few mins. she said something about the surgery being schedualed for the 30th. I said that we had been told it was on the 20th. After telling me that the surgons would be out of town from the 19-23 she asked who told me the date of the surgery. I told her the name and she said she was standing right there and put me on hold. Kristen (the lady who told us the 20th) came back on the phone and said sorry that they changed it. Well thanks for calling and telling us!! I am beyond angery/disappointed. Josh and I were ready for the 20th. We got put on the list for RDH and Josh was just about to put in his request off form. And now we have to wait another 10 days. Sigh. I just want to be done and over with this. It is mentally and physically draining! On told of all of this the doc. was concerned that Malachi lost weight, which in turn made me worried! We know that he will be so much healthier after this surgery is done with and that makes it that much harder to understand why they pushed it back! Im going to go sulk in my own greif! Tomorrow I will be better, I promise!

Boogies

Well...the cough and boggies have been caused by a sinus infection! Poor little guy! We got some antibiotics and he should be feeling better soon! The shots didn't go well, he cried for 30 mins after they were over! Dramatics! He is sleeping now and I know he will be VERY unhappy when he wakes up! Im going to get going so i can enjoy my peace! Happy 6 month birthday baby boy! We love you!

6 Months

Malachi will be 6 months old tomorrow! We are celebrating with his 6 months shots at the doc. Yuck. When he got his 4 month shots he was a BEAST afterward. Tomorrow I will be brining the Tylenol and will be ready to give it to him. We will also give him his favorite dinner...sweet potatoes! Exciting day, I know.

The BIG day is getting closer and closer. We are busy getting things in line. Josh is working on sub plans for 7 to 10 days, I've been busy talking to the PICU social worker trying to line up our stay at the Ronald McDonald House and we have both been going over finances for our week in Chicago. Not to mention we are getting Malachi dedicated the sunday before we leave and hosting a big lunch at our house afterwards! And while we have all of this going on, I still have to take him to 6 doc appoints in 2 weeks! Soon this will all be over and we will be wondering what to do with all our free time!

Good news, his cough is getting a lot better!! I have only heard him cough twice today! Praise God. Josh is currently sucking boogies out! It seems like the never ending processes. He is a boogie making machiene!

I will be posting more and more as we get closer to the big date! Keep praying for Malachi!!!

Surgery and other stuff

Jan. 20th is the BIG day! The day that we have been looking forward to and dreading at the same time. The day we hand over Malachi to the skilled surgeons to fix his broken heart! Josh and I have been busy preparing ourselves mentally for the overload of emotions we will experience at the end of the month. We are focusing on the positive outcomes that this surgery will provide for Malachi. He will have a working heart, many of his other health complication will lessen, he will have more energy and he will (hopfully) stop taking majority of his medications which are currently keeping him alive! We can't wait for this to be done witth. We are thankful that Malachi will remember none of it! We will be keeping you all updated on his progress through the surgery and through out his recovery! Malachi is our hero!
Aside from all the medical issues Malachi is doing great! He is growing (now 10.13 oz) and making progress in eating, as well! He is getting more and more active and learning how to get his arms and legs under him! We are getting excited to start PT and OT. Hopfully we will get started before the 20th, but we heard there is a waiting list out here. Our lawyer is going to write the company and see if she can get our name pushed farther up on that list.
Some good news, Malachi had his VCUG donw today and we found out that everything looks normal! There is no Urinary Reflux! Josh and I are very excited to cross yet another possible complication off the list!
No other exciting news. He has a little cold Josh and I are trying everything so it doesnt turn into anything!! Please pray God keeps him healthy!
Thank you for all your support! There are a few things we would ask you to pray for.
*The docs and nurses that will be doing the surgery. Give them knowledge, steady hands and gentle touch.
*For Josh and I as we prepare for 7-10 days of recovery. This will be a very difficult time for us!
*For finances. We will be eating 3 meals a day out! Thats 21-30 meals we will ahve to buy. This expence is not in our budget but we are confident God will provide one way or another.
*Thank God for keeping Malachi healthy, for sustaining him and being the Great physician!

We are thankful for each of you!! Love you!

The new year...

Happy New Year! We have been so busy around here I haven't even had a chance to blog about Christmas. Please know that we are all doing GREAT! We are in the process of switching all of Malachi's Docs and getting him started in PT, ST,OT and so on. Malachi surgery will still be on the 20th and we are busy trying to keep him healthy. He has a cold right now with a bad cough. We are praying that we can get him through this with no hospitalization. If he gets admitted we will have to wait another 4 weeks for the surgery! Please pray that he gets better soon! And if any one has any home remedies to get rid of a cough let me know!

Have a great first week of 2009! I hope to find time to blog more after Josh goes back to work and things settle down here!