God's Blessings

It has been kind of a sad week for me. Gavin started having seizures again last week. The neurologist had taken him down on the amount of anti-seizure medicine he was taking, so hopefully this is what is causing them. He was hoping to get Gavin off the med, but it looks like he still needs it. Gavin's EEG is Friday, so hopefully it will tell us more. It is so hard to watch him have the seizures! It looks like he is startled and flails his arms out. He also cries a little with them. I don't know if it hurts or if there is another reason why he cries. He usually has them after waking from sleep. Please pray that these can stop! If he does continue to need to be on the anti-seizure meds he will need to be changed to a different kind. His doctor says that what he's on now isn't good for long term.

On a lighter note, Gavin started 'school' last week. A PT comes to our house for about an hour to work with him. She also gives us ideas to help Gavin to progress developmentally. A lot of the stuff I've already been doing with him, but she did have a few great ideas and insight for us!

Gavin has a big weekend coming up! He is going to be baptized on Sunday! He is finally doing well enough and out of the hospital! We are happy about this! We'll have to see how well he tolerates it. He HATES his bath and getting his head wet!

I've posted a few more pictures on the carepage site. The boys have begun running when they see me with the camera! At least Gavin can't get away yet! Although, I would love it if he could! It's funny how things are. Jacob was reminding me about my response to Caleb's first steps. I guess I said, "Oh No! I don't want him to grow up this fast!" Now I would give anything to have Gavin crawling or walking! Be careful what you ask for! I used to say, "I wish they would stay like this forever!" Now I'm wanting Gavin to move along! Oh well!

Thanks for your continued prayers and support!

Love, Alicia and Family

I just wanted to clarify something in response to one of the comments posted. The neurologist doesn't believe that Gavin may have had damage to his brain due to the seizures. The seizures were probably a result of damage done to Gavin's body when he was so dehydrated and sick back in April. Sometimes seizures come about when your brain has had damage done to it. This is most likely the case with Gavin. This does not mean that the 'damage' will be permanent, but when they did a CAT scan they did see white areas on the brain, which shows something to be abnormal on the brain. This could be from the extreme dehydration he suffered from or it could be from being put on heart bypass several times during surgery. In either case, he could recover from this, or not.

I'm sorry to those who might get offended by the term brain damage! I definately don't mean to offend anyone! But, that is what it is.....damage to the brain. It does not offend me at all. Maybe that is because of my schooling as a nurse. It's just a medical term. As for our neurologist, we think he's doing a good job and we very much appreciate his honesty with us! I like ALL the facts! No surprises for me please! Just ask my mom! She threw me a couple of surprise parties in the past and I hated being surprised! I did appreciate the effort though, Mom! :) Anyway, I tell most of Gavin's doctors to tell it like it is! In fact I almost switched cardiologists because he was a "cup half full" kind of doctor and didn't share all of his thoughts about Gavin's situation because of it. That was his explaination to me. I like to be prepared as well as I can be and if that means the doctor says something to me that doesn't sound good, I don't care! I appreciate the honesty! I also know that what they say may not be the case in the future with Gavin. Gavin has surprised so many doctors with the progress he has made! I also know that doctors are human and make mistakes, plus our bodies are very complex! What an Awesome God we have!!! One more thing I know is that God is Gavin's true physician and He alone is taking care of Gavin and all of us! We are very blessed that God gives health professionals these gifts to be able to treat our awesome bodies! I am thankful to all that have been able to get Gavin to as far as he has come! Wow! Did I ramble, or what?! Anyway, just wanted to clarify a couple things!

Also, Gavin is still having issues with gagging. Some days aren't bad at all and other days are. We are so thankful for the good days!

Thanks for your comments, prayers and support! God has blessed us with you! Look for new pictures on the carepage site!

Love Alicia and Family

Gavin is having quite the week! Which means I am too! He has had 3 doctor appointments, an echo on his heart and a sleep study done to make sure he does well off oxygen during the night! Not to mention, we are painting the outside of our house and planning a belated birthday party for our boys since we missed having parties for them while Gavin was in the hospital! I have to make sure that I take time to breathe this week! I guess it's better than being bored!

Anyway, Gavin saw the neurologist on Monday. He ordered another EEG to be done on him in a couple of weeks to see if his brain wave activity is better than the last one he had in April. We still don't know if there was permanent brain damage done. The neurologist thought that Gavin looked well and is slowly taking him off the anti-seizure medicine. He said that being on this can slow Gavin down developmentally and make him really tired and slow, so hopefully when he gets off the med he will be able to progress easier. He was concerned about Gavin's eyes since one seems to look the other way at times. He said this could be a reaction to meds, a sign of brain damage or just a sight problem. So, now we get to add an eye doctor to the list! Oh, and an audiologist! I'm not concerned at all about his hearing though! He definately hears everything! Although, he has that limited hearing thing going on just like his brothers and dad do! They are very good at ignoring things they don't want to hear! The neurologist said one of the best ways to know if there is brain damage is whether or not Gavin tries to be social with us. In the past he wasn't so much, but the last week or two he has made progress this way by trying to 'talk' to me and looking at me more when I talk to him. We'll just have to wait and see. We may not know for years really.

Next we saw the cardiologist. He was very happy with Gavin's progress. He took him off another dose of dieuretic and told us that we could lower the calories Gavin was getting each day. He had been on a higher calorie formula since most 'heart babies' have a difficult time growing. Gavin is definately growing now! He's become quite a little chunk! The cardiologist also said that Gavin could come off the oxygen at night! Yay! Except, now we have to wait for the O.K. from the pulmonologist. Hopefully the sleep study shows that Gavin stays oxygenated during the night! Then he will be tube free! Like I said before, he does not like that tube on his face! The heart echo showed that Gavin's pulmonary pressures were normal! This is great news since they had been so high in the past. This is why we are able to maybe get him off the O2! Nolan came with me for these appointments and was my note taker! He just sat and listened and wrote things down that he thought were important! He was quite interested in everything and had a lot to talk about afterwards! He was a big help since we were given many changes to make. I only wish he listened this well all the time!

This afternoon we go to the endocronologist. Gavin is on Thyroid meds and levels need to be checked to make sure he's taking the right dose. So, this visit will probably be a boring one and hopefully not bring about anymore changes, unless they are good ones!

So, all in all there are good things happening with Gavin! Thanks for your continued prayers and support!

Love, Alicia and Family

Gavin is home again! We got home this afternoon. He is doing well and for this we are thankful! He was sent home on less dieuretics than he had been on. The cardiologists said he may be outgrowing the need for them. They will take it slow, but plan on getting him off them if Gavin tolerates this. So, we are making progress! Yay! Blood work showed that he was low on some of his electrolytes, so the visit was worthwhile. He is now on a medication to replace these and will have to have frequent blood draws to make sure the levels are in the normal range.

Health professionals continue to be impressed with how well Gavin is doing despite this hospitalization. Actually, the hospitalization is probably due to him doing better because he became dehydrated with the amount of dieuretics he had previously needed. They say Gavin just needs lots of fine tuning. What works today with him may not be the case tomorrow.

I ran into many doctors and nurses that have treated Gavin before while at the hospital. I ran into them in the elevator or the halls. They all recognized me and were shocked to see us back again. As the boys would say: "Gavin is famous!" He definately has made himself well known! One doctor remembered him from back in December when he was first hospitalized before going to U of M. She said "some things and people you just never forget." She even remembered the room number he was in! She was very happy with how well Gavin looks, considering how poor he was doing back then. So, though slow, we are definately making progress! I will have to remember this on the days that I'm having a hard time seeing progress being made. Help me with this, O.K.?

Thanks for your messages and prayers! God is so good to us!

Love, Alicia and Family

Gavin is still in the hospital, but doing much better! As soon as he got some extra fluids in him he fell asleep and has been content ever since! Thank God he is so persistant! He must have been yelling at us: "I need fluids! I'm not going to stop crying until I get what I want and need!" They believe he has a virus and with the fever and being on dieuretics, he became dehydrated quickly! Thankfully he exhibited the same signs as last time and I knew to get him in soon. They say this should be a short stay, but we'll see. It is so good to see him doing better though!

It is kind of nice being here because with him catching up on sleep and not having the wild brothers running around, I was able to write some much needed thankyou cards! I have been quite behind with these! Sorry! I know that I have forgotten people who have done wonderful and kind deeds for us! For this I am sorry to those I might have forgotten. Some days I forget how old I am, so don't feel too bad! Please know that though you didn't receive a note from us, we are very thankful to you! We want to thank those who continue to pray for us, who send encouraging messages and cards and for the many generous things people continue to do for us!

Jacob was really sad that Gavin was back in the hospital! He said, "I was hoping that we'd never see that hospital again!" I told him that I had hoped for the same thing, but.....He also said that he was sad because he looked forward to holding Gavin each day and now wouldn't be able to do this today. How sweet a big brother he is! He has been so helpful lately. Since Gavin demands to be held quite often, I have a hard time getting things done most days, or taking a shower for that matter! Jacob has been helping a lot in this department by holding Gavin for me and helping out more too! So, I'm thankful for his willingness when most boys his age wouldn't want to be sitting around and helping with this. I know I complain about our crazy boys, but they all have such great qualities too! Nolan is a great teacher to Caleb and most of the time keeps him entertained. As for Caleb, as you know, he supplies the humor needed each day! Just thought I'd share the good qualities too!

Have a great day! Keep those prayers going!

Love, Alicia and Family

Guess who's in the hospital again? You got it, Gavin! He has been quite fussy the last couple of days. He is often times fussy, but it's only because he loves to be held. As soon as someone holds him he's usually happy as can be. Yesterday nothing helped. He just cried and cried! Last night he came down with a fever and was starting to look dehydrated again, so away he went to the E.R. with Joel. I didn't have it in me to take him after the day I had with him, so I'm so thankful Joel has today off and was able to take him in. So far all the tests are coming back negative, but they decided to admit him until they find out what is wrong. So, here we go again!!! Please pray that he feels better soon and that they can figure out what is going on with him. Also, please pray that we can get some sleep and not be grumpy! Pray for our boys too! I feel so bad that their life is always disrupted by this!

Thanks for your prayers! I'll keep you posted.

Love, Alicia and Family

Gavin is doing a little better with the gagging issue, but still has problems with it throughout the day. We saw the surgeon who did his G-tube surgery this week. He told us that this may stop and it may not. There isn't much that can be done. He said there is a medicine to help with it, but not here in the U.S. Hopefully it will get better on it's own after time.

Gavin is off oxygen all day long now and seems to be doing well with this. He has it on at night and he sure does complain when it's time to put it back on! Hopefully his echo shows that he can be off it for good soon! His pulmonologist wants to do a sleep study with Gavin off the O2 before we take him off completely. He wants to make sure that he doesn't desat during the night first. I pray that these tests show that Gavin is ready to be off because he thinks he's ready! He yells at me when I put it back on and continues to try to pull it off his face through the night. Half the time I check on him to find it pulled out, so I don't know how good it's doing anyway!

Bootcamp is going OK, but I don't see much progress with him. He is getting better head control and seems stronger, but like everything with Gavin it is taking longer than I would like! I really need to relax because Gavin has 2 strikes against him. He has been hospitalized for so long and he has Down Syndrome. I don't know why I think he should be progressing faster. I guess because I'm used to it happening naturally with our other children. We have to really work for Gavin to develop. Some days this bothers me because I feel like there is such a long road ahead! We don't even know how far Gavin will get developmentally. Other days I feel up to the challenge and work him hard! I just try to take it one day at a time and trust that God will get us through.

I tried feeding Gavin babyfood again today. He did not like it at all! He isn't used to having anything in his mouth and what has been in there, like the vent tube, wasn't pleasant. So, this will be another challenge for him. We will have to keep trying and hope that he changes his mind because we don't want him to have to get nutrition from the tube forever.

Hope you all had a great 4th of July! We were able to take the older boys out to fireworks! Grandma and Grandpa O. offered to watch Gavin. It was great getting out with the boys for some fun again!

Thanks for your continued prayers!

Love, Alicia and Family