So yesterday was really as bad as I thought it would be. Just REALLY Really sad. This kid was just such a great kid and it was evident just by the line that was a 2 hr wait. The family was there from 2-at least 9:30 with the longest lines. He was buried in his basketball uniform which was so heartbreaking. He just LOVED basketball and my husband. He wrote this essay for his college apps which was all about the basketball team. I just balled when I read it. I hope to post it soon. You will get to see what an amazing kid he was. Rick really had a hard time. I just worry about him, his team and his family.

Isaiah is back in another spell. As you probably may notice, his cycles are getting closer and worse. He is not on any meds. b/c we have tried them for the past yr. and have not seen a difference but I am afraid we are back to the drawing board. We have got to find something that works. My poor kid is just suffering with these spells. I wish I could post a video of how horrifying it is but trust me, you would not want to see it. Outside of his spells, he is sooo happy. but during, it's like he is in the worse pain and there is nothing you can do about it. Others may say to bring him in to the hospital everytime and sedate him. But with our life it is just not possible. Hmmm, let's see, we still have another mitol kiddo who is high need and Janessa. There just has to be something that is going to work for him. We have some appts. coming up and I am really going to get on them about this. I will hospitalize him for his next spell if I am not getting anywhere just so they can see first hand BUT they need to do something to maintain his care at home. KWIM?? Am I making any sense??? Probably not!!! Just feel like I am in a trance of sadness this week.

So tomorrow is going to be a really difficult day. Ryan's wake is tomorrow. I have been so down about his death and the weird thing is that I only met his once. But I think it is hurt for his mom and siblings. Just the thought of losing a child I can't even imagine. Although I chose not to think about this in my day-to-day life with the boys but know it could happen at anytime with them. It just brings thoughts of your own child's mortality to life. It is just really sad. I don't think it matter what age your child is when you lose them b/c is the end it is someone you brought into the world and they are supposed to outlive you and when they don't......... So I think I am going to be a wrecked at the wake. I worry about Rick. He really loved that kid. He just keeps saying that he is the type of kid that you would want our daughter to marry. His team is going to be a mess. Just all around sad. Please continue to pray for his family, team and friends.

Prayers Needed

Today was a very sad day. Rick got a call this am that one of his players was killed in a car crash last night. Rick describes him as the kind of kid you want your daughter to marry. Just an all around great kid. He was a senior and on of triplets. Just very sad. Please keep his family and team in your thoughts and prayers. Tomorrow is actually the first day of basketball practice and I am sure a very difficult one for the team. He really loved the team and was happy to be a part of it..

Also more prayers are needed for my friend Debbie. Marlo is back in the hospital with respiratory issues. This has been a really rough road for her family as she just got our of the hospital with both girls last week and is back in with one of them this week. Hugs girls.

So here are a few pictures from the week. We had a GREAT week. So happy to have my family here. We just love my sister's new family and look forward to seeing them soon. Janessa and the girls (Nyia and Mia) had fun as always. It is like no time has passed for them. They were very sad to leave each other. So this means another visit very soon.

We also did our family pictures. Here are my grandparent and my new baby cousin Benjamin, aren't they all so cute. We took tons of family pictures and I cannot wait to show you all. We could not have asked for a better week. They boys were feeling so good and enjoyed Thankgiving food. They were so cute, both sitting in their chairs and when it was time to say grace, Isaiah grabbed Avery's hand and they both had big grins on their faces. It just brought tears to my eyes. Again what a wonderful holiday and I hope everyone's was as blessed as ours was.

So I thought I'd start this post by saying what I am thankful for as we have so much to be and it is the season.

I am so thankful that God has chosen Rick and I to be parents to these three amazing gifts. They have fulfilled and changed our lives in so many positives ways. I cannot imagine life without any of them.

I am thankful for the great husband and father that Rick is, many families don't survive life with a special needs child, let alone 2.

I am thankful for our friends and family. We are so very lucky to have the strong support system and it has really gotten us through so many hard times.

I am so so thankful for that we were able to move given the difficult obstacles and help. THis move has completely enhanced our families lives and came at exactly the right time. I can't imagine how we would have survived this difficult summer if we were still living an hour away.

I am thankful that Rick and I have such great jobs that are very supportive of our lives.

I am so thankful that Avery has overcome so many obstacles and is now starting to thrive.

I am thankful for all the great nursing care my boys get b/c life would be impossible without them.


I/we have just so much more to be thankful for and I don't ever forget it. Many people ask "how we do it" . We do it b/c we love our children and to us this is the family that God has given us and it could be so much worse and it is our job to thive these kids the best possible life that we can. I am just thankful that God has set us up in so many ways to guide us through our job.

I am really looking forward to this week b/c family is coming to town and the boys are feeling great and so is Janessa. At the end of week we are doing our family picture of 4 generations. I am so excited. It is times like this that fill me up and show me how good life is. I will have pictures at the end of the week of the whole family.

I was Right!!!

Mr. Isaiah does have an ear infection in both ears. Poor guy. The stress of this to his system apparently set him into a retching spell. I just cannot believe he has ear infections. This is a first for him. Thank God I am an audiologist. It definetely has it perks. I was right on the money about how his ears looked. He is on an antibiotic and should be feeling better in a couple of days. Just enough time before the family comes to town. I swear my sister has only seen Isaiah in a spell. I want them to see the real Isaiah.

Janessa also has strep yet again. She just had it 4 weeks ago. I hope this is not starting a trend for her.

Basically I spent my entire day related to drs. and antibiotics for the kids. Do you know that I have not had a single day off from work for me, EVER. Any day off whether planned or call-ins is covered by drs. appts. There is always something to do. It is either related to the kids and appts. or I am behind on work and need to take extra time to do that. I just want ONE day for just me. I have an Elizabeth Grady gift card that is now a couple of yrs old (luckily there is no expiration date on it) that I would like to use on myself but never have the time too. I just need to make the time, I guess.

Next week is going to be a really good week. My family is coming to town and at the end of the week we are taking a picture of FOUR generations for my grandparents. It is a once in a lifetime opportunity but I think such a rememberable one. It will be fun. I think......

We are cooking here with some friends and family over. It is too difficult to travel with the boys and I have no nurse that day so we will have to wing it. I have not even started Christmas shopping and envy those who are near done or have even started. I better get going.

I hope all is well for everyone. Please continue to pray for my friend Debbie as she is going on day 13 in the hospital with both girls. One is on TPN and awaiting a surgery on Friday and the other is still struggling with O2. This has been really rough for her and family and I can only imagine what things are like for her. Also pray for Miss Eithene who is Avery's little hospital friend, she is back in and hoping her family can get some much needed answers.

My face has finally started to look better. Woohoo. Still have no idea what I am allergic to but will stay away from coconut shrimp and new facial creams for sure. The jewelry party was a blast and a big hit. I got lots and lots of free jewelry which is great for xmas gifts.

Isaiah started his spell today. Sad face. He has been off the topramax as we were not seeing any change in his spells and this is no different then any others in the last 3 yrs. I am hoping it is not as long at the last one. Pray for my man.

Avery on the other hand is doing great. Weight + baby = happy baby gaining milestones. He is really starting to look like a chubba and is doing really well. He has more head control and the therapist are noticing a big difference in him. I am sooo happy. Things are really looking up for him.

Janessa is not feeling well again. Another sore throat. Last time she said this it was strep throat and it was last month. Hopefully it is not that again.

Good NEWS!!! My sister in the family is coming to town next week. We have not seen each other in over a year and have not seen my neice longer than that. Her new husband is coming and I am excited to finally meet him. ALso my aunt and her neice. We are able to see them last month but still always good to see them. So this should be a really good Thanksgiving. Lots to be thankful for.

I look horrible!!!!!

Sorry no pictures to show. Put it this way, Janessa said I looked like a 100 yr old lady that has not slept. Yup, that bad. I woke up on Monday morning looking like a glow worm, my eyes were almost swollen shut. I have never had any type of allergic reaction before. Well here it is thurs. pm and I still look 100yrs old. I am sooo embarressed. You know when you know you don't look good and you think everyone is staring at you. Well they ARE. I am going to the drs. tomorrow and hopefully we can get this under control.

OH did I mention I am having a jewerly party at my house with about 15 people, looking like a horror show.

We had parent/teacher night and I had not met Janessa's teacher yet and was excited to meet her and find out about my daughter in school. Well of course Janessa is a GREAT student and she loves having her. She is ahead academically and doing awesome. Yay. But the whole time the teacher was telling us this, she was looking at me. Well not the whole time but it certainly felt like it. I know she was thinking, now how old is Janessa's mother. Then I felt the need to tell her what happened to my face and she almost seemed relieved.

The house is really coming together and I will post pictures soom. Rick actually did great with the boys room and I will show you that one. But his bathroom, well let's just say, he has awhile to go before you can say he should be allowed to paint. Hehe, sorry babe.

Boys are having a good week.

BTW my friend who still needs prayer, her girls had a good day today. But are still BOTH going to be inpatient for awhile. I just can't even imagine. Continuing to pray for her.

Also pray for my mom who is currently in the hospital overnight with bloodpressure issues. Praying they can figure out what is going on and put a good plan in place for her.

Some very exciting news.......

Mr. Avery has gained some much needed weight. WOOOHOOO. He is a whopping 18.1 pounds. This has taken alot of hard work over the last few weeks but has certainly paid off. He seems like a real baby, KWIM (know what I mean) for those wondering what those initials stand for!!!! He feels plump even though the average person would not describe him as that but for us he seems plump. He is just such a cutie. We are keeping him on the diet b/c he is doing so well. I just cannot believe how quickly he has transformed from such a frail little guy to a baby. I believe this is all prayer and God's work.

Isaiah is doing well, although his tone has changed which means he is having much more involuntary movements which affects other things. Even changing his diaper can be quite the challenge. Other than that he seems to be my Isaiah.

Janessa is really enjoying gymnastics. She is also signed up for basketball which is not at all thrilled about, probably b/c dad is a basketball coach. But we think she will be good at it and at least needs to give it a try.

All I can say right now is that we are blessed and life is good. I hope it is the same for everyone reading this. Our life could be sooo much worse. Just think of all the families in the Dominican Republican that are devasted by the storm (many dead, without food, homes and essentials) we are just blessed.

A friend in need of Prayers

I have a friend that I have met through my P2P website. She and I have many commonalities in that we have 3 children, the older healthy and the 2 younger with the same type of mito. disease. Only she has girls with the disease and her healthy child is a boy. She is always close to my heart as we share many similiar experiences. Both of her girls are in the hospital at the same time in the same room and her oldest is at home sick. Please pray for her strength to get through this rough time. Thanks, her name is Debbie.

One Holiday down and 2 more big ones to go. Okay who has at least started their Xmas shopping. NOT ME... I am one of those the week of Xmas get your shopping done kinda gal and happen to be very productive, may not get the best deal but productive. It is so hard with my kids. Janessa is just not the type of kid that plays with toys. She has a ninetendo DS and I think has used it all of 5-8 times. She does not play with dolls and is not a tv kid. So we get to spoiling her and then she plays with nothing. Although she has no difficultly parting with toys and sending them to other kids which is great. But I feel like it is a waste of $$. Have never found that thing that she loves and always plays with. THen you have the boys, well that is just sooo difficult. They could careless about toys and special needs toys start at about 100.00 a toy b/c they need switch adapters and what-nots. Crazy. As soon as it says "special needs" it means big dollar signs. Then we have to get them enough b/c Janessa will notice and ask why they did not get that much. So Holidays and birthdays are always tough with the boys. This is why they have so many clothes b/c nobody knows what to get them. LOL.

Okay so remember how I have been saying how well Avery is doing. He just LOVES to eat food now and he looks plump, well not plump but for Avery it is plump. KWIM. Here is proof, although he has to be one of the most serious kids ever. He will not EVER smile for anybody except Mommy and Daddy, let alone a camera. Look how good he looks though. Isn't he so handsome.