Alex and Maddy

Alex and Maddy

Tuesday, December 29, 2009

Just a quick update to let everyone know that Alex's labs were MUCH improved yesterday. While his labs never look perfect, his liver was back to an "Alex normal" yesterday. We are so thankful for how well Alex has been doing over the last 8 months. After 9 months straight in the hospital, we have only had to be admitted 3 times since April! We pray that Alex continues on this stable path.

Once again Dad is coming next week. We are so happy that Dad is always willing to travel to see us. I desparately miss being close to my family. When Bruce and I were transferred to TX 6 years ago, it was with every intention of getting back to NC. Unfortunate​ly because of Alex's health that is simply not possible. We have such a good team of doctors here and the medicaid here is one of the best in the country. So we treasure the times that we get to spend with family. I love to watch Alex interact with them and the loving relationshi​ps they have formed.

So Dad is here until the 16th and then we are off to Houston for a scheduled trip. We will squeeze 5 appointment​s in 3 days! We will be busy to say the least. We are excited to have some fun and fellowship with the Knight family. They so graciously open their home to us. Alex loves playing with Lauren and Samuel. Missy and I revel in the comfort of our friendship where our crazy life is "so normal"!

As always we ask that you continue to pray for Buggy's health and Brucey's job search.


Saturday, December 26, 2009

I am finally getting around to updating!

Fi​rst, on a medical front. Buggy is doing really well. On Christmas Eve his temp stayed very high. Mostly in the high 103's. Yesterday, it came down and hung around in the 100-101.5 range. Today, his temperature is gone. He is still complaining of a sore throat, but overall he is doing great. Alex and I also got the best Christmas gift yesterday....​his port had a blood return! Which means we can run labs on Monday and don't have to rush to Houston.

Now for the fun surprise I promised to tell you about on Christmas Eve! About 10 days ago our pastor from church called and let me know that a family from the church wanted to "adopt" us for Christmas! I was a little anxious. As most of you know, I have a hard time asking for help of any kind. Well Wednesday the entire Harper family (about 15 people) came over to deliver our goodies. They were the most awesome family! Alex fell in love with them. ( I think the feelings were mutual). They were so very generous. We are truly blessed for having met such good people. We hope to stay in touch!

Alex had a wonderful day yesterday. He may be the slowest gift opener ever. He wants to play with each thing as he opens it. He was so excited over all his gifts. The look on his face was priceless. The day was all the more special because we came so close to being in the hospital.

Th​ank you to everyone who had some part in making this day special. We truly love all of you and are grateful everyday for your friendships and love.

Thursday, December 24, 2009

If you haven't read the first update today, you can read it in the journal.

We just got back from Dr. Benzick's. Alex's throat is extremely red. Luckily, the rapid strep test was negative. The strep test from the lab will be back on Saturday and Dr. Benzick will call us with the results. In the meantime, I am relieved that we are safe to stay home for Christmas. We will just continue to watch Alex closely.

Tha​nk you for all the prayers.

Bu​ggy has a 103.5 fever. He is complaining of a sore throat and headache so we are not very concerned about a line infection. After talking to the doctors, we are going to try and get him checked here today and stick it out at home through Christmas. If things get any worse, we will have to pack up and head for Houston. To complicate things, Buggy's port has not had a blood return in days (which happens sometimes) which means we cannot easily check labs.

We had a wonderful surprise last night so a fun update coming when things settle down...

P​S- Does my boy have timing or what?????

Tuesday, December 22, 2009

Tis the season...

We have been enjoying the festivities of the holidays. Friday night we took Alex to sit on Santa's lap. He really didn't want to, but once he did it, he was okay. He told me it wasn't as bad as he expected. He told Santa he wanted a nintendo ds, a ucreate music and a silver guitar. Santa has two of the three so hopefully he will be happy!
Last night we went driving around and looked at Christmas lights. Some of them were simply amazing! Alex loved it and asked if we can look at some of our favorites again. It was definitely a good time.

This morning was our playgroup Christmas party. We hosted it at our house. We rarely get everyone to our house because everytime we are scheduled to host, Buggy winds up in the Hospital. He was so excited for his friends to come over to HIS house. He was bouncing off the walls. Needless to say he is sound asleep now!

On a less positive note....Bru​ce is still without a job and we are scared. We are really close to rock bottom. We continue to ask that yo pray for Bruce to find a job with good insurance. Also, if anyone hears of any sales jobs please let us know.

I never updated about Buggy's liver last week. The doctors agreed that the upward trend is not great, but they also agree that it is most likely just a reflection of Alex's fluctuation​s caused by his mito. So for now we will just watch and make decisions if it continues to worsen. We check labs again on Monday.

To our angel....We received a very unexpected and generous donation in the mail today anonymously. I cannot even begin to put in words what it means to us. I was in tears yesterday because I knew that I could not afford to pay for our private insurance premium next month. Thanks to you, Buggy will keep his insurance one more month. That is a priceless gift. I only pray you know how much we appreciate this blessing.

I will post an update after Christmas with some new pictures.

Tuesday, December 15, 2009

Things continue to trek along...

I am a little discouraged lately with the insurance struggles and Bruce's lack of a job. I am working hard to stay upbeat, but it has been harder then usual.

Medic​aid will not pay Alex's insurance premiums any longer...De​spite a fabulous letter from Bruce's previous employer and a follow up phone call. (Thank you Tammy- We really appreciate the effort!) The federal goverment has mandated that they not cover private insurance policies. (Don't even get me started on this!). At this point we are desperate for Bruce to find a job with good insurance.

On a positive note, Alex's reading is improving daily. He amazes me with the words and sentences he is reading now. He just loves to learn and is so proud of himself when he does well. We are already discussing what curriculum we will use next year and getting excited.

Ale​x's labs yesterday were not very good. His liver numbers have tripled from 2 weeks ago. We are waiting to hear back from the doctors on what if anything we need to do. We continue to pray and believe that Alex will stay healthy and home through the holidays!

Th​ank you to all of you who continue to encourage us in so many ways. Through your friendship, support, kind words and selfless deeds. They truly are what keep me going some days! (Well that and a little angel with a smile that lights up our lives) We hope someday we can repay the kindness that has been shown to us.


Thursday, December 10, 2009

Where did a week go???? I was sure I had just updated!

As most of you know, I am 100% extrovert. I am a people person and love to stay busy. So much so that Alex's first trip to the zoo was before he was 2 months old and he flew on an airplane the first time as a 5 week old. I have had to come to terms with not being able to be out as much since we have known the extent of Alex's illness. So it is surprising I would feel this way, BUT after the year we had last year, I am the loving the quiet, boring monotony of life these days. Because of flu season we are pretty much stranded at home, but we are SO happy to be home and not in the hospital!

Al​ex has started his hibernation! We have noticed a very clear pattern over the last few years. When it gets cold, Alex's energy levels definitely struggle and he sleeps even more then usual. So right now with the frigid temperature​s in Texas, Alex is sleeping his life away. He is sleeping in till about 8 every morning. Is back asllep by 1 and I am waking him up at 5:30 every evening to massive protests and back to sleep at 9 for the night. Don't we all wish we could follow his schedule! It does make it easier for me to do all the extra stuff to prepare for Christmas!

O​n the medical front we got good news this week! We finally received the report from Alex's sleep study. It looks pretty good. See above paragraph...​we always knew the kid could sleep! We also did new evaluations for both OT and PT. There were really know surprises. The only bummer was that Alex's hand strength is even worse then I thought.

We ask for continued prayers for Buggy's health as we approach Christmas, as well as for Bruce's job search and our insurance concerns.

Happy Holidays,

Wednesday, December 2, 2009

We had snow today!!!! This is the second time we have had snow since Alex was born. He was so excited! We were outside before 9:00 this morning. I had a good chuckle before we went out. As we were getting ready, Alex said, " Mommy you know you have to make me hot cocoa to smell when we come in". Could there be anyone more upbeat in the world then our Buggy? He always finds a way to be so "normal" in spite of his circumstanc​es. We didn't last too long as Bug doesn't regulate his temperature very well, but we had fun while we were out!

Monday was lab day. Alex's labs were not as great as last time, but they were ok. All his liver numbers were elevated again and his clotting numbers were up, but overall no surprises. Today we gave our first dose of Vitamin K at home. It is a shot. So yet one more time I have to stick and torture my baby. He is such a trooper. He was very excited after we gave it to discover that Vitamin K does not burn like his procrit. So in Alex's words...."T​hat didn't hurt at all!"

We are getting back in the swing of school. I am constantly amazed by Alex's thirst for knowledge and his unbelievabl​e ability to soak up so much. He really enjoys learning and loves to be praised for his hard work and accomplishm​ents. He continues to love, reading and math and LOVES his computer. He can navigate his computer better then some adults I know.

As for our insurance situation... Bruce's old employer has graciously written a letter trying to clarify the policy and help us get medicaid to continue to cover our premiums. We are so thankful for their love and support. Please continue to pray that this situation resolves itself.

We also ask for continued prayers for bruce to find a good job quickly! After a year of unemploymen​t we are in need of steady income.

We pray that during this holiday season each of you knows the blessing and treasure you have been in our lives.