Quack Quack...

Hi there! first I will say Christmas was great...sort of. We were all sick but stayed home from all festivities and danced around the house to Christmas music. We had Chinese food for Christmas and In laws brought left overs for later. The kids loved their gifts...Paige asked us if Santa had a car to drive to our house. We tried to explain to her that Santa has a sleigh and reindeer to fly in the sky...She looked at us like we were nuts and said, "I want to see it." She gave us the "yeah right" look as she said it...I couldn't help but laugh.

Maddie's eyes are horrible still. I will post a video of it so you can see some of what I am talking about. This video was from today and she is watching a TV show looking up. I wish I knew what she was having this problem because it just doesn't look right. We got a call from her neurologist in Peabody that they rescheduled her apt for the week earlier...so we will be going on Monday. I am hoping they may have some answers about her eyes for us.

So here is something I just needed to post...I heard the most beautiful set of words tonight...I was sitting with Maddie and showing her a duck. I randomly asked her what does a duck do...I swear she said, " Qua qua"! It was very quiet, under her breath, and she may not say this again for another 2 months...but it does not matter. She said it and that means she understands the question! I was almost tearing at the sound!!

I will end with this short post and video but will post some more soon...Hope you all have a great New Year!!!

Best Pictures I could get of the girls with Maddie's eyes not doing well this week and Paige's lip....But they are still the most beautiful girls I have ever seen!!!

Ahhh! Christmas is Here!

I can not believe that we are only 2 days away!!! I think I am finished with my shopping but I guess we will find out on Christmas...I never realized how crazy shopping could be but I guess when you have 2 toddlers and both parents working full time, shopping is not anything like I remembered :)

I completed an official project that I am really proud of (I tend to start projects and have a hard time finishing them so I was really happy to have completed this one :)...I made these books for Maddie's therapists that had a ton of pictures I took of Maddie doing all the different things they helped her to achieve (Rolling, focusing, pulling up, holding her head up, etc...). It had little phrases to go with each picture...anyway they really liked them and I was happy to have finished them in time for Christmas. I am also happy to say that I actually mailed out Christmas cards this year!!! I still have many of the last few years worth of Christmas cards completely filled out and addressed...I just never had the time to mail them out. I am not sure how I found the time this year but I did it!

I am happy to say that even though Maddie has had a hell of a week with bad eyes she is still doing great walking! I brought her to a play group Tuesday and she did super! She really is a bubbly toddler! I think that her bubbliness really masks any delays she may have. She is absolutely loving Christmas music! She shakes her little bum like there is no tomorrow! It is super cute. It has been harder to get good pictures of the girls lately because of Maddie and her eye problems and of course Paige's dog bite. I took some the other day that came out pretty good. I will post a few when I get them on the computer.

I would like to say that Maddie is sleeping better but every time I do that she stops...so let's just say she has been nice to me in the last few days and leave it at that :) Maddie has officially been able to avoid going to her doctor (other than for the flu shot) for over a month! That is a record!!! She has even been sick with the croup for the last few weeks but no need for the docs as she is trucking through it just fine! She also has not had another ear infection since having tubes in months ago! We have our Boston visit January 11th and hopefully will be able to make it till then with no other apts :)

Paige is doing super too! She is quite the preschooler...I peaked through the window to watch her at daycare the other day and she was twirling around in her princess dress ups and high heels.
I bought she and Maddie the same green pea coat (they look super cute together when they wear them) and Paige loves to tell everyone that she has the same coat as her sister.
She is now sleeping through the night with no pull ups!!! I am so psyched to not have to buy pull ups or diapers for Paige! They are ridiculously expensive when you have 2 in them! At home with Maddie, I try and used the cloth diapers. We can not use them for daycare though and Rob hates them :) Either way less pull ups = more $ so I am happy!


As Christmas approaches, I do find myself missing the times we spent at Aunt Becky's house...With Grandpa in his Santa hat and Christmas sweater...Uncle Kim making sure the kids were not drinking alcohol in their soda glasses, Grandma bringing all of her make up samples, singing songs and opening presents with the family. Even the kids could help with the cooking, or spend time with the adults by the Christmas tree...I really miss the time we all spent together then. I remember everyone was always happy...It didn't matter what had gone on that day...or how many arguments were stirring before the party...When we were all together, it seemed like all those worries disappeared, and we were just happy being together as a family. I am so lucky to have had this experience because this is what I want for my kids to remember about Christmas. Christmas shouldn't be about who got what or how much you spent on a gift...It's about being together with the people you love the most and celebrating a miracle. I personally feel we have many miracles to celebrate this year and am very thankful for this.

So...that is it for now...hope you all have a great holiday!!!! And thanks again for all your support!!!

Visit with Santa...

Ok..Ok...So not the best picture with Santa...Maddie's eyes were bad this day and Paige insisted she HAD to wear Maddie's sunglasses. But you know what??? Santa held Maddie for 15 whole seconds without Maddie throwing a fit! Just long enough to get a picture :) So it may not be the perfect picture, but it certainly shows a picture of our reality :)

Maddie continues to do well developmentally. She is still having "bad days"...but they don't seem to last into "bad weeks" like they used to.

I am going to start taking Maddie to a play group on Tuesday's. They have some tumble equipment and mats to work on strengthening her arms. One of her therapists had mentioned that she brought Maddie into another room at daycare to do some work on the tumble climbing equipment. She said that Maddie really liked this and so they are going to try this with her. We have these same climbing mat equipment at a playgroup that a coworker runs for work. She brings her 2 year old son and 1 year old niece. I think it would really help Maddie.

So I have officially been given the "talk" by daycare...you know, the "your child is hitting other kids" talk...Really??? My sweat little do nothing wrong ever Maddie??? I have to say
I wasn't surprised. Although, Maddie is actually our first experience with this (hitting) as Paige never had this behavior...

Initially I was thinking this was great! This is an age appropriate behavior for the average 1 year old...so she is really catching up! But I guess another parent who saw her hit their baby thought it was not so great. She really isn't hitting to be mean, she looks around and laughs and is actually really "petting" the other babies....OK maybe not really petting but she really isn't violent. We are constantly repeating, "gentle Maddie" and "no thank-you"...It is really hard to come up with a consistent consequence for a toddler who is too immature to understand that consequences are not funny... At school they try "time outs"...and she thinks this is fun... in fact when her friends get time outs, she walks over to them with her blankie and sits down next to them.

Time out seems to work for all the other 15 month olds...but not Maddie...who would have guessed right!?

Maddie has had a few episodes but still not nearly as many as she used to when she was crawling...A week or so ago, we were in a store and Maddie was literally flopping around on the floor. I was at a kids store and she was on carpet so I let her do it w/out picking her up. She wasn't crying this time so I just let her go. Other people were commenting how funny she was flip flopping with her eyes closed and thought she was just really tired...Yesterday at daycare she managed to have one and remain standing (although drunken baby like) and was walking into walls with her eyes closed. I swear, if we hadn't gone through all the testing we have gone through in the last months this stuff would make me a basket case of nerves. But we all know, despite her weird problems, she is still progressing developmentally and that is really the main focus besides her physical health. We go back to Boston Children's in just a few more weeks and look forward to hearing what their thoughts are now that she is walking. I have gone for my blood testing but the results won't be in for 5-6 weeks. Rob will go January 1st when he will officially be under my insurance...which is much better than his.

Life at our house has settled since the craziness we have had in the last month. We are excited for Christmas because Paige really seems to understand that Santa brings presents. I have realized in my Christmas shopping this year, that I have become "that Mom" I swore I would never become...The "character" Mom.

I swore no child of mine would ever wear that stupid Disney shirt, the flashing Dora shoes, or have that tacky princess backpack...However I apparently have found my weakness... A 3 year old's, "But Mommy I want one," seems to have convinced me to be that tacky Mom after all...well at least at home in private :) So needless to say, Paige will have her Dora PJ's, blankets and coloring books for Christmas and we will all be happy :)

Next week will be crazy...I work for 3 days and then I am off for about 1 1/2 weeks with both the girls:) I hope to do 1 more update before Christmas. Hope you are all done with your shopping! Christmas is next week already!!!

Here is a little something Maddie would like to show...

Taking a breather...

So first I want to thank everyone for their comments. I do not know how to respond to each direct comment so I will write it in this blog. It is a really great feeling to have such a supportive family...and friends. We really appreciate you all connecting with us!

Now, Paige....She is doing super! Her face swelling has gone down dramatically!!! The surgeon did an amazing job and I can not wait to see it fully once the scabs fall off. He aligned her lip back perfectly! We went for a follow up apt and they said she is healing beautifully. She is still on antibiotics for a few more days but she is healing very fast! The plastic surgeon gave us suggestions for treating the scar and she will go back to see him in about 5 weeks. I will post a picture of her progress. She again, is the strongest child I have ever seen...still have not heard her once complain of ANY pain!!! Now, if we could only handle preschool...Paige went back to school on Thursday last week for the first time since the incident. She came home that day and told us that a few kids told her she had "poop on my lip." Rob jumps up and wants to know who said it to her so he can, "take care of it." He needed to be reminded that these kids are 3 and 4...It was sweet how protective he became....but he also needs to know this is only preschool and we have a long road ahead! He said he will just start teaching her some really good come backs instead....I am not sure which one is worse :)

Maddie continues to do well walking. While today I was debating the idea of dropping her at the neighbors doorstep in a basket with a pretty bow , before today she had been doing great. She really is acting more toddler like! I asked her to go get her coat without even pointing and she got it!!! This may not sound too big of a deal but for Maddie it is. She has made some HUGE gains in understanding what I am saying. I talked with one of her therapists last week about how to continue to strengthen her arms now that she is no longer crawling. Maddie is weaker in her arms and trunk so I would like to keep up with strengthening this area as she is no longer using a lot of these muscles. In fact Maddie has terrible posture. She sits at the end of her tailbone and slouches over not really holding her shoulders or chest up well for any length of time. She will certainly be hearing the same line my mother told me over and over again as a kid..."Put your shoulders back!"
Since Maddie started walking, I really think a lot of pressure from her eyes/face has been relieved because she is no longer in that position (head down from crawling.) I really do think this may be a piece of the puzzle as she started having photophobia right after she started crawling. She does still have bad days (clearly after today), however they have been fewer than when she was crawling.

I will update more again soon. I am exhausted and need to get some sleep...Maddie's sleep has sucked lately!

Seriously????

As if our life isn't already crazy enough, our little Paige had quite the end to her weekend. Sunday night we were all playing in the girl's room when Paige walked in with a chip. Rob and I told her she needed to eat her chip in the kitchen and not her room. Paige ran out of the room with the chip half in her mouth. Well the dog must have assumed the chip was for her and went to grab it and bit Paige in the face...bad.

An ambulance trip and plastic surgeon later, Paige is looking better. Her lip is really swollen but looks so much better than it did. She will go back tomorrow w/ Rob to the plastic surgery place for them to finish and check the progress. I think it is healing just perfectly...they did a very good job sewing it up. I have also realized that Paige is the toughest of all of us. After all the screaming and crying her Daddy and I did when we saw her, Paige calmed down before we did. In the ambulance she looked up at me with her lip hanging (1/2 of her top left lip), she said, "Can I just have a band aid and go home?" ...Oh did I just want to squeeze her when she said that. At the hospital they gave her morphine for her pain and she got really goofy and funny. I guess I can say that I saw my daughter's first official high! She really liked that medicine!

So the dog...Rajah...My first words were, "She is gone!!! Get rid of her!"... I was so angry and could not believe our always sweat dog could do this. Of course after all this, reality hit that this was not Paige's fault, or Rajah's...This was our fault as parents. Maddie was giving the dog food all night. It just was a freak accident that should not have ever happened. While apart of me hates the dog for doing what she did, the other part of me hates myself for not being smart enough to realize that it could happen. We have since stopped allowing the kids to feed the dog and Rajah goes into our bedroom whenever we are eating. We brought Rajah to the vet and discussed what we should do. The vet gave us those suggestions and agreed that it would not be a good idea to get rid of her. She said it did not seem like an aversion to kids that some dogs have but more of a territorial around food. For this reason no food and dog at the same time.

Paige really does love our dog and I am not sure how fair it would be to her to get rid of her either. We really just need to be much more vigilant as parents and that is the bottom line.

Weird thing is, with Maddie finally walking, I have been almost anticipating a really big accident from her because of her weak wobbly stuff. Or even a dislocation as she is so extremely flexible...I certainly was not expecting this for Paige as our first family emergency.

I have to say, she certainly is one tough cookie! She had her 3 year check up today and is perfect developmentally. Her doc noticed she was a little shaky in the hands and asked for a urine sample to check her sugar level. She said she would get back to us on this one. She also said Paige was knock knees pretty bad and may have knee trouble in her future. I thought it was pretty normal to have knock knees at this age so I never thought it was a big deal.

So there it is...our week in a nutshell. Again, somehow, God has mistakenly thought we had a really boring life and decided to throw just one more thing our way. We handled it well for being our first emergency and Paige is a trooper.

Maddie is also doing really well. She had about 4 bad days and now seems to be back to good! That was a really short "bad day" period for her. I really think walking is better than crawling for her. We are just really glad she seems to be flying in her development despite her bad days. She is still not really loving sleep, but I guess we will take anything we can get from her :)

Interesting research...

So today we got the letter from Boston..."To the parents of Madeline Ploof,...as our discussion Madeline has had a one letter change on the TSC1 gene"...so on and so forth. The letter came with the lab slips to go get tested.
So doing some research after getting the info, I was reading about familial and somatic changes on this gene and what it could mean if she were not to have TSC...because remember if it comes back familial it would most likely not cause TSC because neither Rob or I have symptoms. I read on this site (listed below) that a change on this gene that is Familial has been linked to causing Focal Cortical Dysplasia (which we know Maddie has) of Taylor type. So even if after being tested for this it comes back as a benign gene change for TSC, it certainly could be the genetic link to why she has Cortical Dysplasia. I am not a doctor but from what I am reading it sounds logical. In case there are any research nerds out there like me, here is the link...
http://ghr.nlm.nih.gov/gene=tsc1

On another note yesterday was quite eventful. I was hit from behind from a teenager on the highway. Very little damage is visible on my car as his car went under mine...so I think I may need a new bumper and muffler. His car was certainly totalled. Either way insurance says I need 2 more car seats so the fun begins for the search for 2 fancy shmancy car seats! And no kids were in the car. I was fine...bumped my head on the steering wheel as I was looking at the car in front of me...it was kinda funny....I am hoping for a BMW for a rental car....You think it'll happen?

Miss Madeline is walking like a pro. She loves to walk!!! She has had a rough couple of days but it is not holding her back at all. She loves her sister Paige so much! Every morning Maddie wakes up and we go into their room. Paige asks Maddie to come and cuddle her. It is so sweet! Maddie crawls right up on Paige's bed and they snuggle and giggle and roll around. I tried to jump in with them the other day and Paige says, "No Mommy, I want to snuggle with MADDIE."

Can not believe Christmas is only weeks away and we have yet to have a real snow yet! The propane guy came to fill our tank (for heat) and he could only fill it 10 gallons! that is all we have used and we are in December!!! That is crazy!

My little show off!!!

So today was, in a way, a big appointment for Maddie. She had an apt at the Child Development Clinic which is a program for children with special needs to be evaluated by a few different specialist and to have ongoing support. Maddie had a developmental assessment in all areas. She is still having a good week so this was a great time to get a baseline of development. She was incredibly social and goofy. She really was engaging with the specialists and participated in playing with them. Maddie scored AT age appropriate levels for a lot of areas!!! She really did well in doing things I didn't even think she would do like putting little pegs into little holes! What was interesting was that she even scored at level for motor skills despite her weakness in her arms and trunk...they said it was because she was doing other things like walking now.

There was one area she tested at 10 months level and I think it was auditory processing....I can not remember, and a few at 12 months...but the rest were right on target (14 months)!!! She really performed well. She did not have any big melt downs (besides when being touched by them) and showed them her great walking abilities. She has made HUGE progress in the last few months despite her "bad days/weeks". She seems to be doing a great job catching up. The specialist said that while it was clear that Maddie has some "difficulties" and problem areas, she seems to compensate and achieve her goal by doing something else that she CAN do. Which shows she has a real persistent personality...Just like her Mama :)

We have really been lucky getting the support from her great therapists and team here. She has come such a long way in just the short time she started getting therapy. I talked to her physical therapist today who said that we could even start doing 1 every other week therapy instead of 1 a week! This is a very good sign that Maddie is progressing very quickly! She was very impressed with Maddie's progress and said she didn't think Maddie was going to be walking until MAYBE Christmas...neither did I!

So, you will notice soon enough that when Maddie's bad weeks come, my tone will sound much less enthusiastic. I seem to still get nervous when she goes through these "bad" weeks even though I know that it will end soon. I wish I knew what it was that was causing her to have the bad weeks/ episodes. Sometimes when it happens I go a little crazy worrying that she may not snap out of it...but she always does eventually.

And here it is, the best part of the blog...

Last night I got to sleep!!!! Maddie only woke up....are you ready for this??? twice!!!!!!! Ahhhhh...felt so good to wake up and not want to strangle anyone who looked at me. Thank-you Maddie!