Turning the corner

Today is definitely a better day! Yesterday I wound up caling the pediatrician back. He decided we need to start Alex on antibiotics. That is always risky business, but in this case there really was no choice with as bad as Alex was feeling and 5 days of fever. Luckily, he has not had any reactions to the medication and it seems to be doing the trick! His eyes are still goopy and crusty with green drainage and he is still coughing, but so far he is fever free and acting more like himself.
Thank you for praying for my Bug!
Ali

So pitiful!

Alex woke up this morning with his eyes swollen shut and crusty. After some TLC from Mommy and a warm washcloth they are a little better. Poor thing was scared though when he couldn't see. As for the rest....His temp stayed around 101 all day yesterday. So far this morning it is down around 100, so hopefully it will stay that way. He is coughing quite a bit.
I am getting some pushing from Houston to head down, but this is one time when I am pushing back. He is still acting okay and I am confident this is just a virus. Please keep praying for Buggy to feel better!
Ali

Hanging Tough

Buggy is doing okay. His temp stayed between 101.9 and 103.6 all weekend long. Finally around 3 this monring it came down. It has been staying around 100.5 today. He is coughing quite a bit and is really stuffy. In our case that is reassuring. The big fear in a child with a port is a central line infection. When you have a fever and no symptoms it is always the first thought. We have saved a trip to Houston based on the fact that Alex has symptoms so we can feel pretty confident that it isn't a line infection. He is such a trooper. He continues to keep a smile on his face and attempt to play. Hopefully, he can get over this cold quickly so we can recover and get back to our fun summer!

Ali

Please pray!

After talking to Dr. K yesterday, we saw Dr. Benzick. He felt fairly confident that we are dealing with a virus. Today his temperature has continued to climb to 103.6. Please pray that we can avoid a trip to Houston and that Buggy starts to feel better.

Ali

The Good, the Bad and the Ugly!

The good...We survived a week of VBS and had SO much fun! Alex and I were both sad to see it come to an end yesterday. I was so proud of Alex at last nights performance as he sang and danced and enjoyed every minute.

The bad... The week has taken its toll. Alex woke up this morning with a low grade fever and sore throat. After talking to Dr. Koenig it wa decided we had to see our pediatrician today. We are hoping he can reassure us that this is just a little cold or throat infection and we do not have to head to Houston.

The ugly... 18 months with Bruce out of work has really started to take an emotional toll on both Bruce and I. Unless you have been there, i cannot begin to explain the all consuming anxiety and fear. It permeates every thought and every decision. It is so scary to not know how you will pay your bills or pay for groceries and of course somehow manage to keep Alex's precious health insurance going. We have been so blessed with the generosity of family and friends. We are so anxious for Bruce to find the "perfect" job so we can feel a relief from this fear and stress that invade our lives. Please continue to pray with us as we believe God hears our prayers and has something planned for Bruce.

We fell so lucky to have such awesome family and friends that share our hopes,our fears, our tears, and our laughter with us. Thank you for being such an important part of our lives!
Ali

And of course I have pictures!


Alex and his best new buddy







Alex performing his VBS songs and dances

What a Week!

Let me start with the negative...Grandpa left which is always sad! The only thing that makes it a little better is that we are going to see him in July!

Now on to the positive....Alex and I have spent this week at VBS and what a ball we are having! It warms my heart and makes me smile to see Alex thriving with his peers. He so rarely gets to experience being with kids his own age (other then our beloved playgroup). He has done a fabulous job this week. He has learned new songs, told us all about the bible stories and most importantly made a new friend! I was almost in tears this morning watching his new buddy put an arm around him and comfort him when he was sad to say goodbye to me. This little boy has taken Buggy under his wing and really been a good friend. I have been so proud of Alex as he has explained his tubes to numerous people in a matter of fact and confident way. He has even stuck up for himself when he didn't get something during bible story. One of our favorite people at church is in charge of bible story. When she handed out crackers on Tuesday she didn't give Alex any because she knows he can't eat. She told me he asked for crackers and she said "Alex you can't have crackers." He said,"I can't HAVE crackers, but I can SMELL crackers!" I am so impressed with his ability to make his voice heard and his desires met. I could go on and on. I am forever grateful to our church family and how accepting and encouraging they continue to be to our family and Alex.

So most Mom's have pictures of the first day of school...Since we can't do that we have pictures from the first day of VBS!

Too much fun to blog!

We are having a great visit with Grandpa! We have mostly had quiet days! After the pool day last weekend Alex has been sleeping quiet a bit. He has actually slept past 9 three days this week. We have just been spending time at home enjoying each others company.
Monday was Grandpa's birthday so we had a little party. We also ran labs Monday. Overall, they continue to look really good. There were a few hematology labs that were off so we are considering changing the dose of one med and adding a new one.

My main reason for updating is that because I have been so slack about updating I haven't posted pictures from Buggy's birthday party! We had it at a "safari park" which had a train, mechanical animals, miniature golf and more all decorated as if you are in a safari. Alex had a great time!

Here are a few pictures of the party!

Great Day

Another fun day with family and swimming! Not much to report so just some pics!

Quiet, Easy Days

Alex Loved his birthday. We started with therapy and then got to go pick Grandpa up! Alex is ALWAYS so happy to see Grandpa. He entertained the airport with his antics while we were waiting because he was so excited. We made it home by lunchtime to open presents and take a nap. Alex loved all his presents, but I think his favorite was a digital camera he got from Grandpa. It doesn't matter where we are or what is around he'll take a picture of it! We had a nice dinner and then cake. So all in all a good day.

Wednesday and Thursday we just grocery shopped and enjoyed spending time together at home. Which were much needed!

Friday was therapy again. So we have had a nice easy week. We have some more fun stuff planned this coming week starting tomorrow with a visit to Ann and Oscar's house to celebrate Dad's birthday and swim in their pool.

I am sure I will have tons of pics over the next few days!
Ali

Happy Birthday My Sweet Boy

Today my baby turns six! What a crazy six years it has been! Six years ago as I sat in the hospital awaiting the arrival of my firstborn child, I was so full of hopes and dreams. In some ways our dreams have changed, but in so many ways Buggy has been so much more then I could have ever hoped for. Alex is so kind and caring. He is smart and loyal. He is funny. He is so full of life. He is a joy to everyone who meets him. I am so very blessed that God chose me to parent this extraordinary child.

The celebration started early....Last night we had the AWESOME experience of seeing a snek peek of The Karate Kid. Alex really enjoyed the movie and it was one of those things you never get to do. I was pretty amused by the amount of security. There was a line going in guarded by security guards. As you got to the front you had to turn in your cell phones and any electronic equipment capable of recording. Then during the movie the security guards were scanning with night vision to be sure no one was taping it. So overall it was a pretty cool thing! Today we pick Grandpa up and enjoy the day.

To my Buggy-

Thank you for making Mommy's most precious dream come true. You are my perfect son. I am so proud of the little man you are becoming. You are strong and brave. You are kind and caring. You are the smartest, funniest,sweetest boy. You are my heart and my soul. You are the joy in my days.
I love you Bug.

Mommy

Roller Coaster Weekend

This has been a couple days of ups and downs!

It started Thursday morning. Alex woke up with a blood sugar of 39. I knew immediately that I needed to treat the hypoglycemia before he started having seizures. So I followed our treatment plan and administered D50 into his Jtube. The D50 brought his sugars up, but he became extremely nauseaous. I gave nausea medication, but he didn't move off the couch for a good hour. I assumed it was all related to the hypoglycemia and thought we were done with it. Thursday afternoon we started a new medication (for suspected ulcers around his Gtube) that has to go into his Gtube and then clamp his drainage bag from his stomach. I was concerned about him tolerating it, but he did okay.

Fast forward to Friday Morning. We once again gave the new medication. We clamped his drainage for the required time and then unclamped it. By this time we were at therapy. He did an endurance test (which didn't go so great) and then proceeded to vomit everywhere twice. Being the trooper he is he took a minute to get himself together and finished therapy. He had two more doses of the medication on Friday and complained of stomach pain and nausea, but did not vomit again. Saturday we had two more instances of nausea and retching requiring medication. So I made the executive decision to stop the medication for the remainder of the weekend. I had also spoken to the GI office on Friday and the decision was made to hold feeds for a few days since we aren't sure if that is adding into the problems. I am frustrated as we are barely creeping forward on feeds. In the last 10 days we have only managed to gain 5 cc/hr to put us at 25 cc/hr or about halfway!

The good news is that he has felt good today and we have had no nausea or retching at all! Now we just need a new plan to deal with the Gtube pain!

In other good news we are SO happy with our new nurse. We are all very comfortable with her and she is slowing learning the routine and taking on more responsibility. I remain hopeful that she will be with us for a long time.

Sunday is always needle change day for Alex's port. Because it is deaccessed (needle removed) Alex can get wet. We always look forward to a bath, but today we decided to hit the pool for the first time this summer. After years of trying, late last summer we finally got Alex to let go of us and "swim" on his own with a life jacket. I was so proud of him today when he immediately got in and picked up right where he left off last summer. Of course, I got a ton of pictures!!! Enjoy the look of pure joy!









Ali

No News Is Good News

I really don't have much to say! Do you know what a blessing that is????

We have had a good, quiet few days! The usual....therapy, school, naps, etc. School is going well. We only have a few more weeks and we will take a break until we gear up again in late August. I have my curriculum picked out and am just waiting to scrounge up the funds to buy it. Alex is excited once again about what we have decided to study.

Alex had a haircut with Daddy today. He always looks so cute when his hair is freshly cut. And at least we are well past the point where he cries and screams every time he has to go!



We are loving our new nurse! She is so kind and really calm with Alex. I am working to get her up to speed on all our meds, interventions and the many little things it takes each day to keep Buggy going.



I have managed to escape twice this week for some girl time and leave Robin and Bruce to man the fort! I had lunch with a good friend on Tuesday and then had dinner with all my girlfriends from MOMS club last night. It is always so nice to get dressed, do my hair and feel half normal!Thanks for all of you being there to give me a much needed break. It was good for my soul!

The ramp up begins AGAIN! Grandpa is flying in on Tuesday. Which is also Buggy's 6th birthday! Can you believe my baby is going to be six?????We can't wait to see Gramps again. We keep telling him if he is going to come 6 times a year he should just move here!

I think that is all! Prayers as always that Bug stays healthy and that Brucey's perfect job is right around the corner!

Ali