Avery 3 months 1 + weeks

Managed to get some pretty cute pictures yesterday! Avery is doing better over the past few nights with sleeping - thank goodness her fans stopped sending those all night party invitations! she slept nearly 10 hours on Friday night - WOW! We have the house all decorated for the holidays with the exception of our real tree - how in the world did we end up with 3 Christmas trees?? We have Conner's tree done in all stars, then the kids tree which I think cant possibly hold one more onrnament , and our real tree. I think we may need a fourth - but where would we put it? I will post some pictures later when we have the third and last tree up. We always go to a farm and cut our real tree - so it should be a lot of fun this year - Brenden is REALLY into Christmas this year! He is growing up so fast. He asked Santa for Sketchers - I asked him what they looked like and he states "Mom - there shoes" (as if I didn't know that already) How funny - he is so into looking cool these days - he also only requested clothes if they are under armour - have I mentioned he's only 5...!!! He's super excited to take his list to Macy's and put in Santa's mailbox - what a fabulous idea!

Will those dogs eat anything??? SERIOUSLY!

Lets see if I can list the various things that Tucker and Lexi have eaten the past year...

1. Candles (in a glass holder)

2. Socks

3. Matchbox cars

4. Socks (countless socks - this one made the list twice there have been so many)

5. My nightguard for my teeth

6. Weed fabric under the deck

7. my crocs

8. tennis shoes

9. carpet

10. Pillow

11. plastic mosquito lantern

12. Sand bucket

13. Shovel - plastic

14. the stand off a picture frame

15. the pool table leg - ugggggg

16. towel

17. toys - tons and tons of toys have moved to the land of 1/2 eaten toys

18. logs that we have stacked for the firepit - they are a quite delicious Tucker says

19. Nerf football - we found that nicely shredded outback

20. cardboard box

21. Large paintbrush

22. Hampster bedding and food

23. Newspaper

24. Reciepts for all of the baby stuff when Avery was born

25. plastic shopping bags

26. pH strips for the hot tub - container and all

27. The Kitchen scissors that someone left outside on the table - no it wasnt Brenden

28. the edges of the wood blinds in the front windows - this way they dont have to move them to look out

the most handsome boy in the world ... I think anyway

I had to bribe Brenden - but he did model for me yesterday - what a great Thanksgiving day present, cause I got this amazing picture!!!

2 years

Today is the two year annivsary of Conner's passing. We are all missing him so badly. He has filled our lives with so much joy, they far overpower the loss. I cant lie, it is extremely difficult sometimes - a piece of my heart and soul are missing forever. Conner - We LOVE you!!!!!

just a couple more :)

a try at some christmas pictures

Our little party animal went to bed at 6:30 AM - what the heck??? Yes, thats Brenden wearing a tree skirt as a cape - I have never seen a kid SO excited to wear a tree skirt.

some November snow - boy it's cold

this is a picture from Friday's little snow - Brenden was SO excited to see it. Im secretly hoping we get a decent amount this year so he can play in it. We havent had a ton of snow since I was pregnant with him (January 2003) - so I know he would LOVE to play in it. He's already asking about going snow tubing - we took him last year (well Carl did, I sat by the fire in the lodge since Avery was growing in my belly) I cannot wait to get things decorated for Christmas!!! I want to be done by black friday - I better get started!

Avery 3 mths5 days

12 pounds 1 ounce

The kind of post I just hate to write

www.caringbridge.org/visit/isaiahproject

Above is a picture of baby Isaiah. This little angel, is now truly an angel. Isaiah left this world last night at the mere age of 20 months. He suffered from Tay-Sachs just like our Conner. I have never even met this family, but their story is so similar to ours. They have 2 sons, very close in age and their baby was diagnosed with this horrible disease. If you wouldnt mind, please follow the link and leave his family some heartfelt thoughts as they endure some of the toughest days of their lives ahead without their baby boy.

Poor Brenden - ouchie

I took Brenden to the pediatrician today -he is negative for strep, but it seems that he has picked up a virus from those little kindergartners at school. Lets all hope Avery doesn't get it - hopefully she is getting some antibodies from me through the breastmilk. This is one of those lovely childhood virus that you usually only get once in your life, then your immune - sorta like chicken pox. He has some little sores - more like red bumps in his mouth, but no fever for about 12 hours. He did feel up to getting a haircut tonight which he was in desperate need of. He looks like a different kid now - he had so much hair. It's actually quite a bit shorter than I would've liked, but o'well - it will be a nice length in a few weeks. His storyboard (pictured) arrived today - early from Santa. It's a 20x20 - and I'm sure he will be so excited to see it under the tree. It really looks amazing.

Avery 3 months 1 day

Bedtime...... 2 :45am - I think we have a night owl on our hands! Thank goodness for Tivo :) Not a full smile pic, but a one sided smirk... everytime I get the camera out she just cant stop looking at it and make time for smiles.

Avery is 3 whole months old

Oh yeah... 11 pounds 13 ounces

(I just added the top picture - that is Avery at 13 days old, how much she has grown !)

So, 3 months old and still partying all night - Man last night was a long one!!! Avery went to bed at 1:30 - up at 2:20 and stayed up until 5:30 this morning - YIKES! Her night social calender is totally full - she is no longer accepting invitations to the all night disco party - Mommy and Daddy need some sleep!

She seems to have these late nights about once or twice a week. On Monday night she slept all night from 11:45-7:15, then Im not too sure what she was thinking last night. Brenden is home sick from school today - so that make the two of us feeling crappy. He is living on popsicles cause "my mouth hurts". The difference is for him a little Tylenol and he feels a ton better, I could take the whole bottle and my mouth would still hurt! (It's actually our throats, but it sounds so cute when he says it) So looks like we will be playing trains and watching movies, he will have his popsicles, and me my hot tea, and hope for a feel better day tomorrow!

Happy 3 month birthday Avery!

Avery almost 3 months... Missing Conner bad!

So Brenden and I started working on his christmas list last night - So funny! Some of the stuff I had to hint to that Santa may have already picked up for Brenden, but then he throws me a curve ball - and makes me cry. #8 on his list and one he came up with all my himself is a new picture of Brenden and Conner for his room. Im telling you, this little kid is so incredible! He is a spitfire, but so sensitive and sweet. Tonight we were talking about the things we are thankful for - and Brenden tells me that he is thankful for the pictures we have of Conner because they help him to remember. So I immediatly start to tear up and he says "mom - you dont have to cry". Many of you may know that the two year annivarsary of Conner's death is very near (November 26th) So that on top of constantly worrying about Avery has my emotions in a tailspin. I used to worry that Brenden wouldnt remember Conner - but the older he gets the more thoughtful he becomes. So, have no fear, Brenden is going to get a HUGE picture of him and Conner for his bedroom from Santa!

The thing I am most thankful for - it's simple really - my three incredible children. Even though Conner couldnt stay very long, I am SO SO SO thankful for every second I got to spend with him - every smile, cuddle and touch has so much meaning for me. What a valuable lesson he taught me - to never take the simple things for granted. Just putting Brenden to bed every night, or rocking Avery to sleep - are incredibly special moments that I will treasure forever! Thank you to Conner for every thing you have given me - We all love you and miss you so very much

Avery 12 weeks 5 days

Avery 12 weeks 3 days

Avery 12 weeks 2 days

Today optho appt was SO much better than last week. The doctor spent over an hour talking with Carl and I and actually listening to what we were reporting about her eyes at home. What a drastic change from last week. BTW, the doctor we saw today has had several complaints about the Dr. from Wilmer from other patients - so not just us. So, we have good news, and bad news, and some in between too. The good news - is the doc at Hopkins was wrong - she does not need glasses - her farsightedness is well within the normal limits for a child. After two exams from different opthomologists - we are confident that the measurements are correct and she does not require glasses now. The bad news is the doctor suspects a very rare syndrome called Duanes - basically it sounds possibly a little scarier than it actualy is. Basically - she may be missing one of the nerves to the muscles in her left eye. So she has limited movement of the left eye - It never goes past the midline - she cant move it outward toward the side of her head. If she has this, she will always have it - they can do surgery to give her a little more range of motion, but she will never be able to look to that side. Kids and people with Duanes do just fine in life - they just have to turn their heads to see peripherally. The in between news is that there is no definitive test that they can do for Duanes - it's just based on clinical findings and right now she is a bit on the young side. He has also requested an MRI just to be sure that we aren't missing anything more serious - that may take some time to get scheduled since she is so little she will require anesthesia. Also for now we will be patching the right eye for 2 hours a day in order to exercise the left one and see if the motion improves.

Have I yet metioned how completly DONE I am with rare issues. Seriously, Tay-Sachs wasnt enough? Im doing my best to cope with all this, but it's really tough sometimes! It's so upsetting that there is anything at all wrong with Avery.

Avery 12 weeks 1 day

packin on the baby fat!!!! Her cheeks are sure getting round. I still havent been able to catch a smile on camera just yet - but she is definatly smiling more!

Avery 12 weeks old

11 pounds 3 ounces

Avery is 12 weeks old today - how time has flown! We are going for yet one more eye exam this week before we take the plunge into ordering glasses. It's quite an expense - so we definitely want to be sure. Also since the appt at Wilmer was so horrible - I would like to actually get a chance to ask the questions that I have rather than being brushed off. Have I yet mentioned what a horrible appointment we had friday... It makes me SO steaming mad that we went there out of great concern for our daughters health and the doctor was such an ass. You would think that someone in the medical community - especially one specializing in pediatrics would be more compassionate - well not this guy. The pics from this post are from Brenden climbing trees - that's his new thing - loves it! He wanted to hold Avery in the tree for a picture - but I just couldn't do it - so they sat below the tree. I had hopes of getting out there for some awesome fall pictures - but with the lousy weather last week - we just never got there - and now most of the leaves are already on the ground. We headed to Cleveland for the Tay-Sachs event and had a wonderful time - there were 10 families there. We had the awesome chance to catch up with our Tay-Sachs friends. It was a great trip. We won the coolest Tony Hawk skateboard for Brenden's wall, no not his feet - this one's just for show. He was SO excited!!!

crap...

So we had Avery's appt today - she is moderatly farsighted and showing visual maturation delay. For now, the doctor has reccomended glasses - yes thats right, glasses for my 11 week old baby. The plan is to use the glasses to help her focus and hopefully straighten out her eyes so they stop crossing. If at 6 months old she is still crossing she will have eye muscle surgery. It was a tense appointment and has left me feeling pretty icky. This was at Hopkins Wilmer eye - I am going to call the pediatric optho doctor we noramlly see on Monday and talk to her about this plan - to make sure she agrees. The doctor we saw to day has less than great bedside manner and to tell you the truth left me feeling worse than I did when I went in for the appt. On a positive note - he said the need for glasses usually resolves around age 5 or6 - maybe sooner if she needs the surgery.

The leaves are a changing!

Also, just a note that another sweet amazing angel has earned her wings. Riley Luce from Michigan passed away yesterday at the incredible age of 6 from Sandhoff disease. I had the honor of meeting Riley and her family in 2007. We are saddnend and heartbroken by this loss. Please keep her family in your thoughts over the days to come. As we approcah the two year anniversary of Conner's passing these losses are even harder.

Avery 11 weeks old

10 pounds 12.5 ounces

Avery is really getting puggy!! This picture was from about a week ago - and she's nearly a pound heavier now. I am happy to report that she slept her first 8 hour stretch on Friday night - now I would be even happier if she had a repeat preformance - but no luck. She has been sleeping about 5 hours straight at night, but not really going down for the night until between midnight and 2 am - yikes. She is definatly smiling more now - still not a ton, but much improved. My smile count for the day is 3 so far :) Now my goal is to capture it on camera - that should be quite a challange. They are quick, but man, they are cute!!