Monday, June 27, 2011

A mothers heart

Before you have a child you hear people saying and displaying love for their children. You try and imagine the strongness of that love for a child. Once you have children of your own you realize that were so far off from the exactly how much love you need and have for a human being and life you helped create. The parts of their adorable bodies that resemble you are a constant reminder they are yours and how forever they will always be yours. You see your personality in them (which sometimes is a good thing or a bad thing-lol). When they smile at you it literally makes your heart experience a feeling of immediate euphoria and joy. I wish that someone could bottle up a childs smile so that one day when you are having a down day you can open it and it releases this amazing joy that is better than any drug.

After being on a short vacation from all my girls I realized just how much I do miss them and enjoy their tiny moments everyday. I also received some news while I was out of town. Some friends of Jeff and I who were in our old sunday school class a two small children. One of which is Jacob. He is AK's age and they have been in the nursery together since they were born. The Dubois family is absolutely precious and we enjoy them so much as well as Jacob. They were so supportive of us while we are living in Ohio and prayed for our family. This weekend their son went to a routine well visit and was sent for further testing for possible leukemia. He was diagnosed and is now at childrens hospital here in Birmingham. He is having testing today to determine the specific type of cancer and stage. He will also be receiving his port today for chemotherapy. I am asking everyone to add them to their daily prayer list. He is a sweet 3 year old little boy is about to be changed forever. His parents will experience a strength like they never have before with help from prayers and The Lord.

Here is a link to his his FB page that has been created.!/pages/Prayers-for-Jacob-Dubois/138737579538207

Sunday, June 12, 2011

9 down...3 to go

9 months has come and passed us by with a quickness here at the Moran household. On Thursday Blake and Palmer met another milestone. 10 months! Everyone that sees the girls keeps telling me how big they have gotten. I believe them. I remember with Ashlyn Kay that first year crept by slowly. I couldn't wait for her to roll over, sit up, crawl, walk, talk, and everything in between. It seemed to come and go slowly. After her first year I felt like it had truly been A...WHOLE...YEAR. I am not getting that feeling with the twins. We started so late with them and each and everyday blows past me and something new has happened. It is truly amazing to be able to sit (well actually stand because I never sit) and watch how a child grows and how wondrous God's creations are. It is mind blowing to even try to comprehend.
So here is what we can do:

1. Crawl....FAST!. P still army crawls but man can she move. Blake gets up on her hands and knees, crawls for a bit, then gets mad and lays down, pitches a fit, then goes and does it all over again.
2. Pull up on knees.
3. Move from a crawling position to a sitting position and visa versa without busting of the face on tile or wood flooring.
4. Devourer fingers foods such as puffs and their favs right now are Baby Mum Mums
5. B can hold her own bottle when forced and P well that is a different story. She obviously feels like she is too special to do that. She is the princess.
6. Palmer says Mama
7. We are weaning Blake off of her Neocate on to Soy formula. Praise the Lord for that!

Her AFP this month was 78.1 which is down from 112. So thankful for this drop in numbers.

We are going to be taking our first vacation together this upcoming thursday to Orange Beach. This vacation is with Jeff's family. I have decided that it must be documented for comedic purposes. So I am going to take pictures start to finish of our vacation. My friend says she is going to put the pics to video and place music from National Lampoon. Probably fitting if I am guessing. It is going to be so much fun with 3 grandparents, 6 parents, and 7 kids ranging from 10yr-10 months. Caribe Resort be AWARE!

Tuesday, June 7, 2011

Good Tuesday people. Its been a wonderful day here in the Moran house. Started it out with the twins wanting to take a early nap. Yay for mommy getting to enjoy her vanilla creamer with a touch of coffee (love it sweet) & nutella slathered all over toasted wheat bread and a little of the Today show. Normally the twins are bouncing in their seats and AK has taken over the tube with Dora or Peppa Pig, but since Ashlyn Kay actually chose to take a little vacation to "tumpka" as she calls it with her Meme the Great & Papa this weekend I had the house (sort of) to myself.
Then a sweet friend of mine has a set of almost 13 year old twin girls who are out for summer. So I asked them to come over and help out with the girls so I can get stuff done around the house. The big twins played, fed, changed, bathed, entertained again the little twins. All while I cleaned the whole house at one time and not over a period of a week I would like to add, organized a little, and relaxed with some young girls. So obviously if this wasn't the best day ever already then surgeon here in Birmingham's nurse called and gave us Blake's numbers.
December her AFP was 103, March it was 112, and in June it is now down to 78.1. So this is amazing! We haven't heard from Dr. Lim yet but he normally calls a day or so after they fax the results from here to his office. We are so relieved. I was worried about it. We are just so close to our 1 year mark with no major hiccups and I am just ready to start counting down the years for her as a SCT survivor. As usual God has proven to me and reminded me that worrying is his job and not mine. I need to focus my worry into prayer and allow him to work. I love how I have to continue to write this. Ha. You think I would get it by now. I guess I am my daddy's daughter....stubborn as a mule. Love you daddy!

On another note. I took Blake to a chiropractor this week. Yes, yes I know some people think chiropractors are vodoo doctors but here in the Moran household we love them. I fully believe in modern medicine and love it but if there are alternative routes I like to explore those as well. Jeff & I have been concerned with the alignment of Blake's spine and felt a chiropractor would be the least invasive doctor to check her out and watch it. Dr. Jenni Goodman did a scan on her spine to evaluate the autonomic nerves that are damaged and being compressed by her vertebrae. The majority were in the lower portion of her spine which is expected since the tumor was at the base of her spine. She did some adjusting and will continue to adjust her weekly for a while to place the vertebrae back in to alignment and take the pressure off of those nerves to allow for regeneration. Since a lot of her nerves from the tumor to her sacrum were cut she has a large amount of damage. This is the reason why SCT babies have bowel issues. Dr. Goodman is trying to allow these nerves which sometimes give her potty issues to be more open. I'm not saying this will be the cure for the world but if it doesn' t harm my child and only works towards improvement, then why the heck not adjust away. She also put her and Palmer on probiotics to help put back good bacteria in to their immune system.

Things are great here and blessings are many!

Thursday, June 2, 2011

June has officially arrived! I love the summer. I love the sun, pool time, beach time, and lake time. Shorts and tanks make me oh so happy. The summer is also a birthday extravaganza in my family. We just added our first May birthday, this goes to MR. (mary-ross). June brings my mother & ME! July brings AK & my Papa. Then August we will celebrate my Meme & my tiny girls (Palmer & Blake). A lot of cake to be eaten ahead that is for sure. This year June brings another important day. Blake has another AFP check this month. In December we were so pleased with the AFP level. It was 103, down from a count of thousands. March we were hoping for 70's and her count was 112. I was concerned, but was reassured by the surgeons that this was no big deal and we will recheck in June as planned. So here we are in June.

Today Blake had a 6 month (post surgery) follow up with the surgeon here in Birmingham. I also have had some lingering concerns/issues I was anxious to talk to a surgeon about. I actually was looking forward to this appointment. Dr. Harmon started off by checking her tumor site. He felt her wounds which are now scarred over looked well. We talked about potty issues which we will continue to monitor until she is fully potty trained. She is having a slight issue but nothing totally unmanageable or concerning right now. Now that Blake sits up on her own we are so happy, but have a concern because she has a slight lean forward while sitting instead of sitting up straight like most babies. She does this to compensate for the uneven bottom she has. Jeff & I are concerned that she will do this forever and her spine will grow with a curve and she could create scoliosis. The surgeon said that was out of his range of expertise and is referring her to a ortho doc to keep a watch on this. So that made me happy. :)

Then we got to the AFP concerns. I asked what our next game plan was or would be for a increase or decrease or stay the same. If her number drops (say 50 points) then that is great and everything continues on as normal with quarterly rechecks and the 1 year MRI in Cincy. If her number increases (say 50 points) then he wants to have a MRI done and see if there is anything on the images. Then obviously asses from there. If the number stays the same then he said he would have to scratch his head and think that one over. So still not sure about that. He went ahead and had the lab draw the AFP today. I should have a call from his nurse on Tuesday with her results. He was also going to call Lim to update him on the current plan of action.

So now as usual we sit and wait...anxiously wait for those numbers that I look forward to and dread hearing all at the same time every three months. He reassured me that this is a part of having a SCT baby and that its part of the game as unfair as that is. Bluh is what I want to say!
As usual I intend to continue my daily prayers for her numbers to show what we need them too. We are so close to a major milestone marker with no hiccups. I think being in the NICU was easier because you expected problems and when they didn't happen you were so relieved and surprised. Now that we have two bouncing happy baby girls it just shakes me to think something might happen. I will continue to trust in the Lord that he does have a plan and his plan does not include harm to her.