No Excuse

Ok I have no excuse to not have updated a post since July. Well I have been traveling a lot, been absorbed by Facebook and Alex's Caringbridge site. So I do have excuses, not necessarily vaild but I will throw them out there anyway. We are all doing fine and I will update just a bit on Alex since you can get more information about his Cystic Hygroma treatment on his caringbridge site ( www.caringbridge.com/visit/alexhoward ). So Alex had did very well with his first treatment and it seemed to go down quite a bit. Two weeks later I was in Toronto for work and saw via webcam call with my husband that his CH was just huge. So I called his Dr. from Toronto, and big props to Dr. Chaudhry at MUSC. Within 1 minute of calling the hospital, he was on the phone with me. Amazing!!! Anyway, he said to try not to worry and we would be seeing him soon as his appointment was coming up. We went back to MUSC on August 10th and Alex's CH was starting to go back down. Alex had his second treatment last Tuesday and did very well. His CH didn't go down like it did after the first treatment but it is just a wait and see thing. I am waiting for his office to call me to set up our next treatment in 4-6 weeks. It's hard, so hard to see your child lay in the hospital. I am thankful for people God has placed in our path that we have been able to connect with, that can understand what it is we are dealing with. So we are just back to the waiting game to see what it does between now and our next treatment. Other than the CH Alex is normal, healthy and just great. He is just about to turn 11 months old. He says Ma Ma, Da Da, Ella, Mi Mi and just yesterday I was saying Poppi to him and he said Pa Pa (well something very close to that) and he said it again today....Can't wait for my dad to hear that!!! He also says bye bye and waves and is starting to say "up" when he is picked up. He has been standing on his own for about a month and took 1-2 steps a few weeks ago and he is still at that point. He is so close to walking, he will take that step or two and then just slowly sit down. He will be running before I know it!!! Can't believe my little boy will be 1 next month.

Now, little miss Ella. She is just growing up so much!!! She just started school Tuesday and is now in real "big kids school - kindergarten" Last year she went to the school half days for K4 but now it's all day with the big kids. She loves it. Her first day we walked into the room and her teacher knew her name and showed Ella the bunnys and hamsters and frogs they have in class. Ella was in heaven. I was trying to kiss on her and hug her and have those special mommy moments....Ella just waved me off and said "bye mom" Oh how it hurts, but oh how proud I am. I love her independence and her being to inquisitive!!! I will blink my eye and she will be in high school!!

Stephen and I are doing well. We are both happy that my travels are over for this year. It was great to go to all the places I was able to travel to for work, it truly is a blessing that God put me in this job, doing my hearts desire....serving Him internationally. I am as blessed to have a husband that supports that and helps so much with everything. I know it's not easy when I am gone but he doesn't complain. I will post some photos soon of Ella's first day of school and of Alex's treatment. I will try to update more often.

Holly

Alex Update

Alex had his first treatment yesterday at MUSC (medical univ of charleston). He did great and will be going home today. I have updated in more detail on his caring bridge site: www.caringbridge.com/visit/alexhoward.

Thanks for all the prayers, they were felt, needed and still needed.

Holly

Good Googly Moogly

I can't believe it has been so long since an update. Man, time flies and I just get busier and busier. We are all fine. Alex is doing great and getting ready for his first treatment tomorrow...more on that later. I have been so busy with work and traveling. In May I went to Winnipeg which was great but it was cold and snowy!! June 5-17 I was in the Ukraine for 1 week and Prague for a week. Both were amazing and it was great to see some of the same children at came in the Ukraine that were there last year. Prague was just unbelieveable. I can't even put into words how beautiful the city is. My computer at work crashed and I am waiting for a new one and can't post photos on my temporary computer but will as soon as I get a new one. I never seem to have the time to do it on our home computer!! Ella finished up her first year of school (4K). She had to adjust to no school for the summer and still doesn't quite understand it, she askes everyday if she will be going to "big kids school"....I guess that is a good sign that she wants to go back. Alex, the boy is growning and going all over the place. He now has 2 bottom teeth and a top tooth about to break through any day now. He is pulling up like crazy and just wants to walk so bad so I wouldn't at all be suprised if he was an early walker. Ella walked at 10 1/2 months.....but I will be fine with him staying in the crawling stage as long as he wants too. Once they walk, it's on. He really is doing well. He will have his first treatment for his Cystic Hygroma tomorrow. We will go to Charleston tonight and get admitted to the hospital at 6:45am. I don't know if they will have wi-fi or not but if they do I will post updates, probably on Alex's caringbridge site that I started to have all of his medical things in one place. It's www.caringbridge.com/visit/alexhoward We are just encouraged and although I am nervous and at times weepy, I have a peace and calm...for now anyway. I am thankful for that. We just pray that we will remain calm and that the treatment will go well and Alex will respond to it. I am just amazed at the outpouring of love for Alex and our family. Thanks to everyone for your prayers!!!

Holly

What's New

Have mercy, I have not posted much lately. Just life.....busy busy busy!!! It isn't slowing down for me that is for sure. We are all doing pretty well. Stephen has been so busy at the University getting ready for graduation. Glad when that is over and his schedule slows down a bit. I can't complain, his schedule is pretty good and only a few times a year does it call for longer hours. They are always understanding if he needs to adjust his schdule for a Dr. appointment or when I am traveling and he needs to take Ella to school. Speaking of miss thing, she is just getting bigger and growning up so fast. It's unbelieveable that she is almost 5 years old, just over a month from now. She has done really well with her first year of school and likes it. Last week we had a Mommy / Ella day. I have been away so much traveling and taking Alex to Dr. appointments she needed a special girl day. We did some shopping and went to a pottery shop and painted and the day is not complete without Chuck E. Cheese!! She is enjoying having a baby brother more and more. She is interacting with him more now because he laughs at her and gives her attention which she just eats up. He is "her baby" and she is very protective over him. She got a hair cut the other day and it's her first real style. It's a little short in the back and just a little longer in the front. I wasn't sur how she would react to shorter hair but she loves it and couldn't wait to show everyone at school. Well, Alex has just turned 7 months is 18 lbs and 27". It's hard to believe he is 7 months old already. Here are some things he is doing now:
* started rolling over in March and rolls all over now
* sits up unassisted
* Says "Da Da", "Mum Mum" "ba ba" and a lot of other cute sounds
* waves bye bye
* on the verge of crawling, he gets up on all fours rocks and scoots his little legs
and gets up on his feet but doesn't know what to do
* Is eating stage 2 foods but still NO Teeth!!
* loves his jump-a-roo and goes crazy especially early in the morning when I walk in
the room, I think he is going to bounce himself right out of the thing.
* loves to watch Ella and laughs out loud whenever she is around
* still sleeps all night 7:30pm-6am

Travel is getting ready to pick back up for me. I leave Friday for Winnipeg and return on Sunday. I will be home a week and then go to Toronto for 3 days home a week and then to the Ukraine from June 5-12th and then to Prague from the 13th-17th. I will be home a couple of days and then off to the beach for a much needed family vacation.

Alex is getting an MRI today and on Monday we will go to Charleston to meet with the Intervention Radiologist to discuss the best treatment for Alex. I am posting most of his medical information on www.caringbridge.org/visit/alexhoward

CaringBridge Site for Alex

I have decided to create a site for Alex on CaringBridge. I will continue to update this blog about our life etc. but most of Alex's medical updates will be on the Caring Bridge site.

You can access it by going to Caringbridge.org and entering his name with no spaces "alexhoward"

Or here is the site:

http://caringbridge.org/visit/alexhoward

Holly

Charleston Dr. Update

We spent the weekend in Charleston, SC and it was so nice. Perfect weather and Alex did great the whole time including the drive. Saturday we got in, in the afternoon and after checking into the hotel we went to the beach for an hour. Alex didn't quite know what to make of the water but it was fun. Saturday we drove out to Magnolia Plantation and walked the gardens. It was beautiful. Then we went into Charleston and walked around the market and my parents favorite candy store that has the best pralines in the world!! We drove down to the Battery area and walked around the park and up and down differnt streets. Just relaxing to walk around without a set adgenda or time-frame. That night we ate at Water's Edge. It was VERY good, I highly recommend the salmon! Monday, fun time over, we packed up checked out, got breakfast and headed to the hospital. My mind was racing and my stomach was in knots, I don't know why I am so at peace with things until I actually go to the Dr.....maybe it's just denial that anything is wrong until I am facing it head on. UGH!!! Anyway, I did like this Dr. and he said that he was sure that it was Cystic Hygroma (which we already knew) and he gave the run-down of possible options: surgery or sclerotherpy (ie chemo). He said that before we make any decisions they want to do an MRI. All we know is what we can see on his neck/back....we don't know what or how extensive it could be, where we can see (it could be in his chest and we just can't see it). So the MRI will tell them everything they need to know. We are set up to go the last week of May and he will be put to sleep for the MRI since you have to be still, and there is no way to keep a 6mo old still!!! After the MRI we will meet with another Dr. that will evaluate him and let us know what sclerotherapy options may be best for him. The Dr. said that they would like to try that first instead of surgery if possible. I think that there are just more risks with surgery in the neck area where so many nerves are located. So we are back in the wait period. I think I am ok, but haven't really processed everything yet. We have not ruled out staying with our Dr. in Greenville. We just don't know and have not really had the time to process. Prayer, that is what we need....that and for time to just stand still long enough for me to breathe and appreciate my kids while they are kids. Time is just gone before I know it....with my work and the Dr. appts it seems like my life is just one schedule after another!! I will upload some photos from Charleston very soon, if you are my friend on Face Book I have already uploaded some there.

Special thanks to my Mom and Dad who helped with Ella while we were gone, they have been so amazing any time we have needed them, they are there no questions asked...I hope Stephen and I are as good to our children as they have been to us!

Another special thanks to all of you who I know check this blog and some that I don't...Thanks for your prayers, they are felt and so needed. If you check in on this blog every now and then and would like to, leave a comment, you don't have to really say anything just let me know you stopped by so I can say a prayer of thanks specifically for you!

Holly

Alex Dr. Appointment Update

It has been nice to be home for a a change. We are all doing well but we had to take Alex to and ENT (Ear Nose Throat) Dr. because he keeps getting ear infections. The Dr. said he needed to get tubes in his ears. The will call me next week to let me know when. The Dr. asked about the mass on his neck and he highly suggested that we see a Dr. with MUSC (Medical Univ of SC) in Charleston. There is a Dr. there that specializes in neck masses and has seen other CH patients. We have an appointment on April 20th. I like the Dr. we are seeing now but it can never hurt to get another opinion, especially one that deals with this more often. I just want it to go away, I don't want my son to have to deal with this. I pray that whatever treatment we choose will be the best for him. There is no cure for CH and only a few options for treatments, sometimes they are successful sometimes not.....we will just have to pray and wait. Ella has been so sweet and she is such a sweet little girl that loves her baby brother. After I took Alex to the ENT, Ella rubbed his little cheek and said "You did so good at the Dr. Alex, I am so proud of you." Oh, those moments are just the most precious. Ella is almost finished with her first year of school 4K. It's gone by so fast, she has enjoyed it and has done really well. Alex has achieved a milestone, he has started to roll over. He's rolling like crazy now that he has the hang of it and it won't be long before he starts scooting around. I wish I could slow time down.....these days are going too fast!