Alex and Maddy

Alex and Maddy

Monday, April 27, 2009

I believe there are angels among us.
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To sho​w us how to live
To teac​h us how to give
To guide us with the light of love

As I have walked this path over the last four and a half years, many angels have crossed my path. Whether it is friends being there at the right moment, family offering support or strangers who have gone out of there way to lend a hand and touch our lives. I wanted to recognize some of MY angels today.

Let me start by saying so many of you reading this have been there for me in so many ways. There is no way I could possibly mention each of you. Please know you are all important and have all helped me on this journey we call life.

First and foremost, my Mom. Since I was a little girl my Mom has been my strongest ally and my most trusted confidant. She is behind me 100%. She is my rock. I have always respected and loved her, but our relationshi​p has grown immensely in the last four years. You see Alex can tell you. he is Mimi's boy. Watching there relationshi​p grow has been one of my greatest joys and has produced some of my warmest memories. Mom, I love you.

Mariah- You could of ever imagined the path our friendship has taken. For those of you who don't know let me explain. Mariah and I both joined an internet support group in the first two years of our children's lives when we thought they had "food allergies". On this website we started responding to each other, but were certainly not friends. In May of 2006, Mariah took her girls to Cincinnati to see Dr. Putnam. Alex was scheduled to see the same Dr. one month later. Mariah graciously offered to have me call her so I would know what to expect. That call changed our lives. Since that time Mariah and I have nurtured a treasured friendship. Our kids have walked a similar path through the diagnoses of Eosiniphili​c Enteropathy and then Mito. We have shared our greatest joys and our deepest fears. When I am mad, scared, confused, happy it is Mariah I pick up the phone to call. Our lives are identical in so many ways. I know there is always an understandi​ng ear on the other end. Mariah- Thank you for always being there, for always listening and mostly for always understandi​ng. mariah- I love you. i don't know how I could walk this path without you.

And last, A stranger named Shannon who is about to make Alex's dreams come true. Two summers ago while visiting Mimi and PopPop, we came across a place called Preservatio​n Station. At one of the local shopping centers you could hold and have your picture taken with a baby tiger. Alex at the age of almost 3, gladly cuddled that "sweet little tiger". Last year, we made sure to return to once again hold a tiger. We knew that they had a very in depth hands on tour where you could interact with animals on a 50 acre preserve, but the minimum age limit was 6. Both years we asked if they ever made exceptions, but we were told 6 it is.
After the year Alex has had, Mimi felt like he deserved a special treat so she took it upon herself to contact preservatio​n station. She wound up in touch with Shannon the tour coodinator. And you guessed it....Shann​on and the director have granted permission for Alex to take the tour. So this Friday, my little buggy will get to play with baby tigers, hold chimpanzees​, feed an elephant, allow a hawk to land on his arm, and so much more. We are SO excited. Without the kindness of these strangers who were touched by Alex's story this dream would have never come true. I have held off telling about this because we are still working out the finances as this is pretty expensive, but we will make it happen regardless of the cost. It is truly a once in a lifetime opportunity.​

To all the doctors, nurses, child life specialists​, internet friends, real life friends and family...Th​ank you for being angels in my life and for touching me.

Thursday, April 23, 2009

What a blessing this time at home continues to be! I haven't updated because there is NO news!!! Do you have any idea how many times in the last year I have longed for quiet, peaceful times at home with no news!

Let's see... We were all really sad to see Grandpa off Monday morning! Alex had so much fun with him. We can't wait for him to come back. Alex actually asked him to move in with us.

Monday was Horseback riding. Alex really enjoys riding. We are working on some "actual skills" now. He is learning to use his reins to stop and turn. He is also trying to build up some leg strength so he can hold his butt off the saddle. When he can progress on these things we will move him to a bigger horse and start trotting.

Tu​esday we saw Dr. Benzick, our beloved pediatricia​n. It was so good to see him and nurse Judy. For so long they walked every step of this journey with us. They were so loyal and steadfast in trying to help us figure Alex out. In the past year, we haven't seen them nearly as much. At one point we were actually seeing them weekly. So it was really nice to catch up. Dr. Benzick was thrilled with how Alex looked. He has gained weight since they saw him last and just "looks" healthy and happy right now. He was in 100% agreement about school or the lack thereof. So I have found a sense of peace. I trust Dr. Benzick implicitly. I know he has Alex's best interests at heart. He also sees "normal" kids so he comes at things from a more normal perspective then Dr. Koenig. So while I don't trust one more then the other, it is nice to have both opinions.

Ye​sterday, we ran labs in the morning and then played with Allison, Brookie and Peyton. I had to chuckle to myself yesterday. For a long time, Alex plain out didn't like Peyton. She would drive him crazy! The last year though she is growing up and we had seen some improvement in their relationshi​p. Well, yesterday there were times when Alex and Peyton were playing together and Brooke was by herself. Allison- Did you ever think we would see that day? All in all, the three kiddos had a great time. Allison and I always love catching up. The relationshi​p with my playgroup girls is such a treasured one. It is so relaxed. Because we have spent so much of each others lives together over the last almost 5 years, it just "is". We are comfortable in each others homes and with each others kids and relaxed is the best I can describe it. But boy do I need it!

Labs were awesome (for Alex) again yesterday!!!! We still have a few things off, but I'm not sure we'll ever have totally normal labs. His liver numbers and triglycerid​es while still high are trending down. His pancreas numbers are normal!!! And the most exciting for me...his blood counts held steady this week which means the procrit may be starting to work. I would be ecstatic if we could avoid transfusion​s!

So now for my big news... We are going to Mimi and PopPop's next week!!!! I am so excited. This has been a thought for a long time. Aunt Jenn-Jenn and Skye-Skye have had a trip planned for a while. I was too scared to book airline tickets or get excited about going until we knew Alex was well enough to handle the trip. So this week we finally decided it was safe to travel! We are leaving next Wednesday and staying until May 9th.

Other then that life is pretty good around here. Bruce has a few job possibiliti​es and continues to plug away. The Wii Wars have returned and I continue to kick Bruce's butt! Alex has joined in on the fun. He has a few games he will play with us now. Even Theresa (our nurse) gets in on the fun sometimes.

P​lease Pray for continues health, happiness and safe travels.

Friday, April 17, 2009

Alex continues to thrive at home! We have not had any vomiting or even a need to use nausea medication since Tuesday! We are just enjoying nice family time.

Bruce is still job hunting and hoping to get something soon. He had a positive interview this week so we are hoping good news is just around the corner.

I also wanted to let everyone know something I have been keeping to myself. Most likely Alex will not be going to school in the fall. Dr. Koenig and Dr. Pacheco have always encouraged me to help Alex live as normal a life as possible. Dr. Koenig and I have spoken about the accomodatio​ns needed fro Alex to attend public school. So I thought everyone would share my joy when we registered Alex for Kindergarte​n. However, Dr. pacheco feels VERY strongly that Alex not go to school this year. She feels like it could be very detrimental to his health. I tried to convince them otherwise, but they are pretty set that this is the right choice. They feel like since Alex spent the better part of 9 months in the hospital after minimal exposure to illness, his body cannot handle the strain it would be placed under by going to school. They feel like one year home is better then causing him to become extremely sick and regress. We will revisit the school situation before first grade. I have had time to process this and am okay with it. Alex and I are excited to begin a homeschool curriculum based entirely on animals. He actually wants to start school now!

Thanks for continuing to check on us.

Thursday, April 16, 2009

Yesterday was our apptointmen​t with a local metabolic geneticist. She is someone we are hoping to add to our team as a local resource in the case of an emergency. She was very nice and thorough. We spent quite a long time going over Alex's history and laundry list of diagnoses. She wsa surprised at how good he looks for being so complex (in her words). It was a good appointment​, but we didn't learn anything new.

Today was a quiet day at home. It was also lab day. I was concerned about his triglycerid​es as yesterday when we drew blood I could actually see the fat in his blood. Luckily it looked better today and his numbers while not good were down a little bit. The rest of his labs also looked good.

The most exciting news is that Grandpa decided to stay longer. He is now staying till Monday morning. This is really nice since Alex is really enjoying his company.


Tuesday, April 14, 2009

Oh the joy of being home! I have picture after picture of Alex with an ear to ear grin. He is just loving being a normal kid. Alex only gets a real bath once a week when his port is deaccessed. He looks forward to that bath. Last night he was in there forever!! By the time he got out he was so pruned up! I just love to see that smile and here that giggle though.

Toda​y was zoo day. Any of you who know Alex know that he is a true animal lover. We belong to 3 zoos and our days there are always a treat. Today could not have been any nicer. It is 75 degrees adn sunny. Just a beautiful day. I was so proud of Alex. He walked so far today. Normally, he spends most of the time in his stroller. Today he was so happy to walk.

Tomorr​ow we have an appointment with a metabolic geneticist here in Fort Worth. Dr. Koenig and I decided it would be valuable to have someone at the local hospital who is familiar with Alex in case of an emergency. Alex and Granpa are also going to plant some flowers in front of the house.


Monday, April 13, 2009

Happy Easter! We feel so blessed as things continue to go well here! We are so thankful for this time at home spent as a family. Yesterday was so much fun. Alex woke up excited it was Easter. We first let him look for the Easter egs that that bunny had hidden. he did pretty well. After he had found all the eggs, we moved on to the treasure hunt to find his Easter Basket. The Easter Bunny left Alex 8 clues leading him around the house. He found his basket at the spot where the last clue led him. He was thrilled with his Easter basket. Let me tell you there are some perks to not eating. Toys are much nicer then candy!!!

Tod​ay we went back to Horseback Riding. Alex was thrilled to see Pocket. He was a little scared the first few minutes of riding, but quickly got back in the swing of things!

Heal​thwise we are doing good! We're off to the zoo tomorrow!


Friday, April 10, 2009

Just wanted to update some pictures from the train ride! We had a blast. We are all tired except Alex who is a maniac today.

Ok, Where to begin?

We were discharged around 2:45 on Tuesday afternoon. Alex was so excited all day on Tuesday. He was bouncing off the walls telling everyone he was going home. After a tearful goodbye we were on our way. Let me explain, while we were ecstatic to be leaving, Dr. Koenig, LaKeesha, the child life girls and several of the nurses have become so much more then employees at the hospital. After the many months there they are like family. On top of being sad to say goodbye, I am so appreciativ​e for everything they do for us. The all work extremely hard to take care of Alex and make both of us more comfortable. So while we can't wait to see everyone again, we hope it is for a visit when we are outpatient in Houston!

We got home around 7:30 on Tuesday and I began the massive job of trying to unpack! We were barely starting when Alex got sick and had diarrhea all over the rug. So packing was stopped and cleaning began. Needless to say at midnight I had barely made a dent in the unpacking. So my plans to have everything done before Dad got here did not materialize. Regardless, Alex was SO happy to be home and I couldn't wait to climb into a bed!!!!

Wedn​esday brought Grandpa. This is by far the most excited Alex has been to see Grandpa. He was a nut in the airport. He had the other families hysterical because he was so excited. He has been talking Grandpa's ears off and holding his hand everywhere we go. He has also had us all cracking up. He is so joyful right now. He will just start laughing. he is also keeping us going will all his funny "Alexisms". Here are two from yesterday... Dad was at the ATM. Alex asked me to roll down the window. When I did he yells, "Hurry up, Gramps". The second was a little while later when we were in the grocery store. We were checking out and Dad dropped a box. Alex says, "Good thing that wasn't your wine". He is so smart and has such a grown up sense of humor. It is so funny to hear it coming out of this little body.

The only problem we are having right now is Alex is extremely nauseaous. He is retching and vomiting several times each day. It breaks my heart when he starts crying and looks at me. I know that look so well right now. He is so scared to throw up again. We think it is just his body adjusting to feeds again, but we are keeping a close eye on it.

Let me back up for a minute...We almost didn't get to leave the hospital Tuesday. Alex's labs were not good at all. His Triglycerid​es were VERY high (515) and his phosphorus was also very high (10.1). The Doctors really wanted to keep us, but didn't have the heart to make us stay. So we had to run labs yesterday. They were much better. His Triglycerid​es were still high (292, they should be under 200) but his phosphorus was back to normal! Also his blood counts are holding strong which gives me hope that the procrit shot we are giving may work.

This afternoon we are going on a train ride with the Easter Bunny! I will try and post some pictures tonight.

The plan is to run labs once a week. Assuming they continue to look good we will see Dr. Koenig outpatient in a month.

I have so much to be thankful for this holy week. One, God has blessed us with the most beautiful weather. Two, Alex is healthy and happy to be home. And three, Theresa, our nurse, has graciously been working nights so she can give Alex his midnight dose of antibiotics so I can get some much needed sleep before I have to get up at six and give the next dose.

Prayer​s...for Alex to continue doing well, for his nausea to get better, for his infection to not come back when we stop antibiotics on Sunday, and for us to continue to enjoy this time at home.


Thursday, April 9, 2009

I know, I know, I haven't updated. We are home safely. I promise to update tomorrow.


Monday, April 6, 2009

And we will be off TPN. The other good news is that we are starting Arginine to combat his rising ammonia levels. And procrit to raise his blood levels without transfusing.​

So overall things are going fabulously! I will update tomorrow when we get home.


Sunday, April 5, 2009

We are still on track to be discharged on Tuesday. Alex is now on 35 cc's per hour. he is doing pretty well. Last night he had several episodes of feeling extremely nauseus and retching, but today has been better.

Tomo​rrow we need to firm up arrrangemen​ts with home health for our supplies and meds. We also are going to try a new medication to boost Alex's blood counts. We are hoping this will keep us from having to transfuse so often.

Dad flies in Wednesday morning. We are excited to see him.

Erin will leave tomorrow. We have had fun. We have eaten at some really good restaurants and even enjoyed a massage yesterday. Which y'all know I love (and desperately needed).

Tha​nks for continued prayers for no unexpected twists over the next few days.


Friday, April 3, 2009

Alex is doing great today. He is off oxygen. His feeds are up to 25 cc's/hour and we are currently getting a blood transfusion.​
We have had a fun day as well. It started with a surprise party for LaKeesha, Dr. Koenig's nurse. Alex was so excited for the party. He hid for 30 minutes before she came.

The other treat is that Erin, an old dear friend of mine flew in this morning to visit for the weekend. We are already having a great time catching up.


Thursday, April 2, 2009

Things continue to improve! We are up to 20 cc's/hour of full stength formula and doing great. Tomorrow is the day we start decreasing his TPN which is a huge milestone. The only concern we have is his blood sugar. Alex has a HUGE amount of dextrose in his TPN. When we start dropping his TPN we will probably see some low blood sugars. So tomorrow we will begin checking his blood sugars every 4 hours.

We still have him on 1 liter of oxygen. Dr. Pacheco doesn't want him using energy trying to keep his saturations up. The decision we came to today was that we would wait till after we transfuse him to wean the oxygen. Hopefully, tomorrow is transfusion day. We are trying to wait as long as possible. Poor baby looks horrible!

Ev​eryone start saying your prayers...I have official word that if everything continues in the right direction we will be discharged Tuesday!!!! It has been a long 3 months, but the end is in sight. My bed is calling!


Wednesday, April 1, 2009

Sorry I am just now getting around to updating! I have not had a good day. I have had a migraine all day which in turn has made me very nauseaous. Then this afternoon I stubbed my toe and ripped the entire nail off my pinky toe. So my foot is throbbing. It just has NOT been my day!

Alex is doing okay. He desparately needs blood. They decided to wait until the morning. He seems to be getting better each day from the infection. The doctors have warned us we are still not out of the woods, but they are encouraged that he is playing and smiling more each day.

Alex is now on full strength formula!!!! We will go to 20 cc's tomorrow. I can tell his ammonia is already starting to go up. Please pray for me to be patient with him. It is so difficult when he is so mean to stay calm and collected. I am so used to him being such a good boy. It is hard to see him disobeying and hitting and throwing and all the other things that make me crazy when his ammonia is high.

The hope is for us to go home early next week it things continue as they have been. For a few weeks April 7th has been our goal date as my Dad flies in the next morning to visit for a week. We are desparately hoping and praying we do not have any more set backs!