Therapy can be tough!


Here is Addie with her new speech therapist - Trish.












Trish seemed to be impressed with Addie's vocal sounds, her recognition of baby signs, her ability to sit up unassisted, how well she is doing reaching for and playing with toys and how well she is doing at eating solid foods. I love receiving positive feedback!

Over the summer, instead of having one-on-one therapy at The Bell Center, I worked with Addie under the directive of her therapists. It was a chance for me to learn even more exercises to do at home and to share with her daycare providers. As of today, her one-on-one therapy started back and she moved up to the "big girl" baby room with a new set of therapists.

I have become quite concerned with the tightness in Addie's arms and legs. I have been working with her and doing daily stretches, but I don't see that we are making progress. Trish noted my concerns and we will talk with Addie's physical therapist about additional exercises. The tightness in Addie's limbs will affect her ability to crawl...among other things. Please pray that our efforts and therapy will decrease the tightness in her limbs and enable her to move more freely.

At the pool...


Addie had the best time splashing and "swimming" in the pool today!

Baby giraffe




















Addie's vampire teeth are making her so miserable. She didn't hardly eat at all today. She was so busy feeling her teeth with her tongue that she couldn't manage to swallow any food. I told her she looked just like a baby giraffe...that made her laugh, so all the green beans ended up decorating her bib and highchair!

Shopping for Halloween...

Yes, I know it's only August. I have been dreading shopping for a Halloween costume for Addie. Once I saw all the costumes out, I decided to go ahead and get it over with. Most costumes for babies are cutesy, little furry costumes with hoods or with hats. Neither of these will work for Addie. I was looking for something that either didn't have a hood or could easily be altered. Thankfully, Gymboree had a few costumes with headbands made from elastic. Chris and I found a costume that is just adorable and knowing it was our best choice, we went ahead and bought it. Well, off to the local seamstress we go!

Addie's first "accident report"









When we picked Addie up from daycare, we were informed that she had her first accident report. Although her little cheek was pink after bumping it on the mean toy, it didn't bruise. She's a tough little baby!

Trying to communicate

While feeding Addie dinner tonight, I apparently wasn't getting the food to her fast enough, because she started banging her hands on the highchair tray! Each time I would give her a bite of food; she would swallow it and then bang her hands on the tray. I signed and told her "more" and "eat or bite" and she would bang her hands again! I will take whatever I can get and I am thrilled to know that she is trying to communicate with me!

Addie's surgery - round two




















Once again, Addie was amazing throughout the whole ordeal. It's tough trying to console a hungry seven-month old for almost three hours, but she was a little trooper! Fortunately, we had the same nurse as last time. She was absolutely wonderful and made our visit a little better! Dr. Davis said that her left tube was completely blocked from the episode where her ear bled so heavily. She also had quite a bit of fluid behind her eardrum; she must have been so miserable! She managed to forgo the IV and tolerated the anesthesia much better this time. She slept for most of the day and woke up this afternoon in great spirits! She is such a sweetheart!

Chunkus is now weighing in at 16.5 pounds!

Take a look at her hair. As of yesterday, the chicken fuzz is starting to lay down. It's trying to part in the middle with a half comb-over/slicked down kind of look...poor baby!
:)

Addie and Alley - Poor "cat cat"



Addie just loves the "cat cats"! Alley sat and took the "abuse" for a few minutes before she had enough...after growing up with Julien, Alley has an amazing tolerance for children!

Watching every move...


Addie was watching Julien while he was at the computer. He decided since she was being so attentive, she should have a turn too...

Pretty in purple


Addie and I had a girls only night! Since Addie isn't old enough for a trip to the spa, we opted for a quiet night at home without the boys...next time we'll make an appointment for the works!

Milestone update

My amazing little baby has started pulling herself towards objects from a sitting position. She puts forth a great deal of effort for just a little advancement each time. She is so determined! This is a great sign that she will start pulling up...hopefully within the next few months!

Transylvania

Addie’s third tooth broke through today! This is her left little vampire tooth…She has been so miserable, this should bring her some well-deserved relief!

Geneticist update

I received an email from one of Addie's geneticists today. She asked if we would come back to see them in six months because they received news from Dr. Dobyns stating that he would have a blood test ready that would detect Microcephaly. She stated that it would be a prenatal test that could be done for future pregnancies. I don't know why I got so irritated by this, but I don't understand why these doctors are putting forth so much effort to develop a test that would detect Microcephaly prenatally instead of trying desperately to develop something that would help the children who are already here. I know that in reality, we are their version of lab rats. I don't want to go back, but at the same time I keep hoping that something helpful to Addie will be presented to me in the near future.

Personal note...update

I had my follow up appointment today and my new doctor is wonderful! She confirmed that the symptoms that I am experiencing are signs of cancer and she would have ordered the mammogram and ultrasound had I not already had them done (she didn't dismiss my concerns at all). She told me that she hears all the time about women being misdiagnosed because they are breastfeeding and it's harder to see and feel problems. She said that she is no longer concerned after reading the radiologist report, but just to be on the safe side has ordered a follow up mammogram and ultrasound in four months.
I thank God for keeping me healthy so that I may take care of my children!

Enough about me...more pictures of Addie and Julien coming soon!

The scare of my life...

My God is my rock, in whom I take refuge, my shield and the horn of my salvation. He is my stronghold, my refuge and my savior—2 Samuel 22:3

Please read this and then pass this on to every woman in your life...

On a very personal note...
I can honestly say that I've had my share of frightening moments in my life, but nothing came close to the last four days. Without going into too much detail...

Last week I became concerned about some suspicious symptoms associated with my breast. After dismissing them for a few days, fear got the best of me. On Friday, I called the lactation consultant at St. Vincent's hoping that she would explain it all away since I am still breastfeeding Addie. Instead, she told me to immediately contact my doctor and insist that I be seen that afternoon or Saturday morning (she reiterated this three more times before I got off the phone with her). I immediately called my doctor and they were unable to work me in (effective today, I have a new doctor). I knew why the lactation consultant was so adamant about me seeing a doctor immediately, so on Saturday I called my aunt. Once again, I was really hoping that she would tell me not to worry, but she told me that instead of waiting, she was scheduling a mammogram and ultrasound for me first thing Monday morning. The symptoms that I were describing to her were indicative of cancer. I was terrified. Thankfully, I got in for both tests this morning (not at St. Vincent's).
It was late this afternoon that I received the results back...I have swollen lymph nodes most likely due to some kind of breast infection, but otherwise, I'm OK! As far as explaining some of the other symptoms...who knows! My body and hormones are just completely out of whack! I'm following up with my new doctor in the morning. There is one thing I need for everybody to get out of this story:


When I first told Chris, he immediately said "but you're only thirty, Jenn". I asked him to pray with me. Following our prayers, a feeling came over me. I instantly thought that I wasn't THE ONE who would be affected by this, that I was going through this so that I could tell my story in order to help someone else. Give or take a few, there are approximately five hundred people who look at this blog every week. If you haven't scheduled your yearly mammogram, do it NOW. If you're concerned about something "suspicious", go have it checked out NOW. It doesn't matter if you are sixty or "only thirty". I believe in my heart that this message will save a life. Please pass this story on...

www.komen.org




Max, Julien and Addie



Seven-month update

The last few weeks have been difficult on Addie. That mean ear just won't give her a break and now she's teething again! Her poor little mouth hurts and she is definitely letting me know it!

Addie has met her seven-month milestones! She transfers objects from one hand to another, she can support her weight on her legs when held upright, she uses her voice to express joy or displeasure (you bet she does!), she responds to her name, struggles to get items out of reach and she shows a great interest in images in a mirror (surely she doesn't get that from me). Today she even managed to pick up a banana puff off of her highchair tray and put it in her mouth. Granted it wasn't with the pincer grasp and it definitely wasn't graceful, but she did it!!!! She is amazing! We have made it much further than any doctor had said that we would!
I continue to pray that Addie meets her milestones on time and that she remains seizure free. I also continue to pray for proper brain development. I know that we will have our obstacles, but I also know that we will overcome them. I know that God has chosen his path for her and I am convinced it is going to be amazing and filled with joy!

Catching up...

I'm going back and adding "pre-Addie" posts. I wanted to catch everyone up on Julien. He is an amazing little boy and we have tons of pictures of him too...! It will take a while, but I have some out there - just check the first posts.

Germs germs germs...















I try to keep my children and my house from being unnecessarily exposed to germs. I have Julien take a shower after being at day camp or school before he is allowed to hold Addie...he rushes through and sometimes forgets to brush his hair. He just wants Addie...can't say that I blame him!

Tough day...















Daycare called me at work late this afternoon because they were concerned about Addie. I am lucky to have two amazing ladies who take care of her. They worry about her and are very conscientious of her needs. She had been crying off and on all day and this afternoon she was inconsolable. This is completely out of the norm for her. I'm hoping tomorrow will be a better day...

On the other hand, Julien had another great day at school!

Ten little piggies...


Julien's first day of school...


Yes, I'm one of "those" mom's...at least I didn't take the picture while we were at the bus stop!
Chris spoiled Julien last year by letting him ride his scooter to the bus stop each morning. This meant that Chris would have to drag it back home each time...well apparently tradition has continued! While waiting for the bus this morning, Julien told me again how nervous he was about the new school and not being able to find his class. I was doing my best to reassure him when we looked up and saw a hot air balloon over our neighborhood; I think he forgot all about his anxiety - it was a neat way for him to start the day! When I picked Julien up this afternoon he was all smiles! He told me that today was the best day of his life "except for our trip to Disney World" and that he thinks this year is going to be really great because "you know mom, I'm older, I get to do more stuff...". He's a mess. He talked about how great his day was all the way home, while doing his homework, while making dinner and all the way through dinner! I am so relieved that all went well for him today. School can be tough sometimes!

Back to surgery...

I took Addie in to see Dr. Davis today and unfortunately, we'll be heading back to surgery. The tube in her left ear is completely blocked. Surgery is scheduled for August 22nd.

Good Mom/Bad Mom...

I promised Julien last week that I would take the day off work today and we would have a “Julien” day. We would take Addie to daycare and spend the day doing whatever he wanted to do. Daycare called yesterday because Addie developed a high fever. When she woke up this morning, her fever had climbed to 103. After all that Julien has been through and regardless of things that happen, I refused to break my promise to him. So, instead of spending a day with my boys, we had a fun family day. We started out by attending orientation at the intermediate school and meeting Julien’s new teacher. After that Julien decided on a movie, lunch, a trip to the pet store (I stood firm when he begged for a pet rat…can’t even fathom it!) and last but not least – bowling. We had the BEST time. Poor Addie was just along for the ride and as long as she had Motrin in her system and was attached to me, life was good. She slept through most of the movie, was enamored by the decorations at the restaurant, laughed at the birds at the pet store and was puzzled by what everyone was doing at the bowling alley. I was able to keep my promise to Julien AND administer lots of non-physical therapy for Addie…stimulation is key to development!

Addie is still running a fever tonight, so we’re heading to the doctor tomorrow. Julien’s first day of school is tomorrow. He’s so nervous about starting a new school and it took a while before he finally fell asleep.

Today was a good day.

GOD is listening...

I continue to have good days and bad days and I suppose that will never change.

Saturday just so happened to be a really bad day. There was not anything that made the day any different, it was just “one of those days”. We had lots of things that we had to do that day and no matter how hard I tried, I couldn’t make myself feel any better. I don’t know why it took me so long to come to the realization that I needed to pray, but later in the day I turned to the only one who knows my grief and pain. I needed strength to make it through the day and I didn’t feel that it was fair to “ruin” the day for others. It wasn’t until the evening that my prayer was answered.

We stopped to do some shopping and the situation presented itself where Julien and Chris were in another part of the store. I decided to walk towards the front of the store to wait. As I’m doing this, in my peripheral vision I see a woman in a wheelchair approaching from a distance. As soon as I saw her, I knew she was going to stop me…and she did. This woman had several obvious physical disabilities and to be quite honest, I was wondering how she was shopping without assistance. She chatted for a moment before she finally asked me “THE question” (she is the first person in seven months to ask). She found a very polite way of asking me if my daughter had any type of disorder. After answering each of her questions, she looked at me and said without a doubt in her voice, “she’s going to be just fine”. I can’t tell you what kind of peace that brought over me. Don’t get me wrong, I in no way think she meant that life would be just grand, but I am convinced that GOD was calming my fears and easing my pain. There have always been signs from GOD – there were signs when I was pregnant, that I didn’t want to see. There are people now in my life that were put here for various reasons and I know that I am being led through each obstacle and decision that I make.

These last few weeks have been really difficult for me because I have received a few emails criticizing me for the prayers that I pray for Addie and some of the comments that I have made. I can’t begin to address those issues because I refuse to get angry with the people who feel the need to criticize me. I pray that I am given the knowledge and strength to help my children each day. I will never apologize to anyone for my actions or comments. That lady was an answer to my prayers – GOD hears me and is responding. Addie will be “just fine” because I will never give up on her.

Graham's 3rd birthday!

Graham had a blast at his 3rd birthday party! What a big boy!















Jackson is getting around like a pro! Check out those leg muscles!






Addie tolerated the water for just a few minutes...wow, was it hot outside!

1977 - What a great year!

This year most of my girlfriends turn 30...this party was for "the other" Jenn. Happy Birthday!





























Not sure what's going on with my hair, but Addie looks precious!


Julien - my handsome little man!

My sweet baby boy

Julien is always telling me that he will take care of Addie. Last night, out of the blue he told Chris and me that when he grows up he is going to buy a mansion so that Addie can live on the first floor and he can live on the second floor. I asked him if he thought his wife would be ok with his little sister living with them...his response: "Well, yes. She's not going to mind." He said it as if his wife would know that it was a "take it or leave it situation". Julien tries so hard to make everything alright. He loves Addie and I pray that his love will continue to grow for her.

Celebrating Nine Years!

My sweet girl had a very busy day! We spent the day by having lunch at one of Addie's favorite restaurants, then I took her s...