December 29, 2009

PT / OT Evaluation 12/29/09

We met with two therapists (PT & OT) through the California Children's Services Medical Therapy Unit (MTU) today over at Tucker school. I was a little nervous what there were going to say about Annabelle. Of course, I wanted them to be impressed with her and her strength (typical mom) but also wanted them to see her need for therapy knowing how critical it is for her development.


video

They were super impressed with her and thought she was adorable. They loved how strong she was and how well she held her head while lying on her belly. They loved that she endured and hour and a half evaluation with very minimal complaining but with lots of smiling and cooing. The PT was excited about Annabelle and her potential. She commented that Annabelle seemed very motivated to do all that they asked of her - she was reaching, grabbing, holding. She is recommending once a week to start and see how it goes from there. This will replace our current in-home PT we have on Thursday's (bummer, I know!). The OT didn't think Annabelle needed any right now but will reassess in a few months. I was very pleased with the therapists, the facility, the evaluation and their recommendations. This was a good start to a long relationship. The MTU will cover Annabelle's PT/OT and equipment needs until she is 21 so I am pleased it is starting off so well. As long as all of the paperwork (red tape) is signed off we will start on January 14th.

December 26, 2009

Playing with some of her new Christmas toys




Benjamin loves spending time with Annabelle. He is so cute with her. He always talks in a quite voice to her and he gives her a play-by-play of what he's doing and where he is going. I am confident they will have a very special bond. Yes, he's wearing a Snow White dress. WHat can I say, he's following in his brothers footsteps :-0

December 23, 2009

Dr. visit recap

Today I took Annabelle to see the pediatrician because she continues to spit it large volumes after every meal. The doctor and I are both concerned that it's reflux but are hoping it's mild and can be managed through positioning and increased burping after meals. She wrote us a prescription for Zantac to be used if we don't see a difference in 1 week.

She weighed 11 lbs 8 oz

December 22, 2009

December 16, 2009

Annabelle in her Bumbo Seat

We were so excited when we got the go ahead from the Orthopedist yesterday at clinic allowing Annabelle to start using her Bumbo seat. When the boys went down for their nap we decided to give it a try. She loved it! Check her out. As one friend put it "she seemed thrilled to be sitting up and enjoying the world on her own". Our little girl is getting SO big.


Whoo hoo this seat is super fun!

Today was a good day!

December 10, 2009

Loving her new hat

Too cute not to post.

This hat was made by Elizabeth - a friend from my mom's work, The Tall Mouse. If you've never been there you should check it out. http://tallmouse.com/

December 9, 2009

Annabelle with her BIG brother Jack

Jack has been begging me to hold his sister since she was born. I have to admit we were definitely to protective of her but keeping in mind that he is only 4 years old and she has had 4 surgeries I think it's a bit understandable.

When Jack woke up from his nap on this day (12/9) I was in a particularly good mood and Benjamin was still sleeping so I asked him if he wanted to hold her. I'm sure you can imagine his excitement after waiting 4 months. He was so gentle and sweet with her. His smile tells it all. She was actually happy as well, but for some reason I can not capture her beautiful smile on camera. She actually gets this face (see picture below) every time I pull out the camera - ugh!!! What to do?? We know that she is a happy, smiling baby so I guess you will just need to take our word for it.

If you would like to see a short video of Jack singing to her please click here.

December 8, 2009

More great PT pictures - 12/8/09

It seems that I get some of Annabelle's best pictures when she is at therapy. I guess that's because my hands are finally free :-)

Annabelle and her physical therapist Stacey work so good together. Stacey works with Annabelle every Tuesday focusing on her neck which was diagnosed with a mild case of Torticollis (surgery induced). Amazingly she can tolerate almost a full hour - quite impressive!


Stretching that neck







Annabelle is such a happy baby even after 45 minutes of "exercise"

December 2, 2009

Meeting Santa for the first time



She quickly became an old pro just like her big brothers

December 1, 2009

The preliminary results are in!

It was pretty bad. Actually worse that I expected, but it's over! I need to get ready for Annabelle physical therapy today at 2pm but I wanted to pass along the preliminary results. They indicated that there was NO REFLUX dected!! Yeah, I couldn't have been happier. I was still pretty shook up by the whole experience and Annabelle was hysterical (no joke) so I still have some unanswered questions. I was told that the official report will be written and sent to the SB be clinic and her Neurologist. I am just so very grateful that no reflux was found and will continue to pray that it stays that way.

I will write more about the "experience" later tonight so to document our first VCUG.

VCUG Today

Children's (Pediatric) Voiding Cystourethrogram

Annabelle is having this test done today at 10:30. Please keep us in your prayers that all goes well and the the results indicate NO reflux. I will update once we have results.

http://www.radiologyinfo.org/en/info.cfm?pg=voidcysto

November 27, 2009

Milestones

A mom friend recently reminded me that is does no good to compare Annabelle to our boys, other babies of similar age or even those books that tell us what a baby "should" be doing at any given age. I appreciated the reminder as I was slightly wondering if Annabelle was doing what she was "supposed" to be doing. Silly, I know, but I guess it's normal mom behavior. I know now that when Annabelle reaches a milestone will be when SHE was supposed to reach it and that will be the right time.

Since this blog is Annabelle's baby book I want to document all the wonderful milestones she has reached so far. It's hard to believe that our baby girl will be 4 months old on Sunday (11/29). The time is going so fast and I want to make sure we always remember her milestones.
  • She "talks" a lot - lots of cooing, gurgling and ya ya ya.
  • She blows bubbles and raspberries.
  • She smiles, big open mouth smiles. Her whole face smiles and her eyes sparkle.
  • She laughs, big belly laughs. She likes to shake her head when somethings really funny.
  • She loves her tongue! She loves to stick it out and works hard to get you to stick yours out at her. When you do she will give you one of those big happy smiles.
  • She can bring her hands together and clasp them. She likes to play with her fingers.
  • She has great focus and attention. She loves to connect eyes with you and talk.
  • She has great head control and enjoys tummy time much more than lying on her back.
She is such a joy! She brings us all such happiness. Her brothers just adore and love her so much. They can't get enough hugs and kisses from her. They pray for her and her health everyday. We are so blessed to have Annabelle in our lives. She teaches me daily about strength and courage and I am inspired by her her happiness and good nature.

PS - Branden added that she's a good sleeper as one of her milestones. I didn't think it qualified but he seemed pretty happy about what a good sleeper she is I felt I should add it. She really does sleep much better (in the night) than either of the boys did at this age. If I only I could get myself to bed earlier :-0

November 23, 2009

Follow up Dr. Appointment today - 11/23/09

I took Annabelle to the doctor's today because she has been spitting up a lot and I was a bit worried since she just had her latest shunt revision and a UTI diagnosis less than 2 weeks ago. Thankfully, Branden was kind enough to meet me there at 4:20 so that I didn't have to take the boys in with me. I think they would have REALLY been freaked out watching their sister be catheterized.

Thankfully, all checked out well. Here urine tested negative, which means her UTI is gone (yeah). Although, she has been spitting up she has still gained weight, so the Dr. wasn't concerned. Her ears, nose and throat all looked good as well. We are going to watch her for more signs of acid reflux. Jack has this and if she does it would mostly likely be mild so I'm not concerned either.

Annabelle gained 6 oz in 6 days!! That is pretty good. She currently weighs: 10 lbs 13 oz. Not to bad when less than 4 months ago she only weighed 4 lbs 9.5 oz!

November 21, 2009

I can see!


Annabelle enjoyed facing forward in the Baby Bjorn for the first time. She is such a focused little girl and she loved looking at everything at the museum. It was a GREAT day. We ended the night at Red Robin for some yummy french fries and ice cream sundays. Unfortunately, Annabelle slept through most of it. Probably better since she couldn't have any :-0

Annabelle with her Big Brothers - 11/21/09



November 17, 2009

Mommy and Annabelle


Relaxing together at Benjamin's Lantern Walk earlier tonight

Follow up Appointment - 11/17/09

Today was a follow up with the pediatrician after last weeks shunt revision. Thankfully all seemed fine except for some increased spitting up. Annabelle is scheduled for her VCUG on December 1st.

10 lbs 7 oz
didn't measure her length
39 cm (head circumference)

November 14, 2009

We are home

To tired to write anything else tonight but wanted to make sure everyone knew we got to come home. Annabelle is asleep in her bed and I can't wait to get into mine!

Thanks for the prayers everyone.

THANK YOU!

Mom: Thank you for all of your help this week. We are so grateful for the wonderful care you gave our children. Thank you for always being willing to adjust your schedule no matter what to take care of them. Thank you for playing with them, feeding them and bathing them! Thank you for loving them as much as we do. We have NO idea how we would get through these situations without you.

Mingie: Thank you for coming down yesterday to help with the boys. Thank you for being there for them. Thank you for playing with them and being silly with them! Thank you for making dinner for us all and helping to get them to eat it :-) Thank you for cuddling Benjamin when I left ~ my heart was breaking for him and I was so grateful that you were there to take care of him.

We LOVE you both very much!

November 12, 2009

Time to recover

The surgery went well and I was able to be with her in the recovery room. They said she was pretty inconsolable before they brought me back at about 3:30. They gave her some pain meds and that seemed to help a bit. I was able to rock her and feed her while we waited for her room to be ready. We are in the room now. It's on the second floor of Miller's Children's West. It's different up here. This is where the "chronically ill" children come. It's a different feel. It's a 4 to 1 nurse ratio so you don't seem them much. Thankfully, it's a private room so that helps a lot.

She is medically doing well, but visibly seems to be having a lot of discomfort. She's crying a lot and her face is red. Bran is rocking her right now and trying to comfort her. He will be leaving soon to relive my mom and be home with the boys. My little Ben was so sweet on the phone, but was sad when I told him I couldn't home tonight. He's still so little and I wish I could hold him to. Jack my "big boy" seemed happy when I talked with him. They just finished dinner and were watching a movie. Doesn't get much better than that, right?

Annabelle will have a kidney ultrasound in the morning as well as a VCUG test to look for signs of kidney reflux. We are hopeful these test will come out negative and that this UTI was just one of those things and not connected to a bigger issue. I am unsure when baby Belle will be coming home but I am hopeful it will be this weekend.

As always, thank you for all of the love and support. We will update again when we can.

Shunt Revision Surgery # 2
























Our sweet little Annabelle is currently having surgery to correct her malfunctioning shunt. We arrived at the ER this morning at about 9:00 am and they have been poking at her every since. She's so little and now dehydrated from the vomiting that they were having a really hard time drawing her blood. They tried both arms, her hand and both feet. She was crying SO much ~ much harder than she has in the past. I truly can't think of anything worse than seeing your child cry in pain. Having to try and kiss away the tears streaming down her face while helping to hold her down for them to draw her blood. This truly feels like hell. I am so sad and I am so angry that she has to go through this again. I would literally do anything to take her pain away. She is such an amazing little girl with such a beautiful smile.

The test also found that she has a Urinary Tract Infection. We know these are very common in children with Spina Bifida and will be treated with antibiotics but it does add a new element to this situation. According to the Pediatrician they will need to run a whole series of tests (mostly focusing on the kidney's) after the surgery to see if anything is going on there that may have caused the infection.

Although we are deeply saddened that this has happened again we are so grateful for the wonderful care that she is getting. Dr. Javahery is a top notch Neurosurgeon and we were lucky enough to have Dr. Alexander the head of Anesthesiology working right along side of him.

After the horrible part of handing Annabelle off to the doctor's I of course completely broke down. I feel so very lucky to have Branden's loving ams to wrap around me and hold me tight. We are both in so much pain, but are so grateful to have each other. I can't imagine having to go through these situations without him. He truly is my rock, my love and my everything.

Thank you Lord for my family, my friends and all that I have. I beg that you please watch over our sweet Annabelle and put your healing hands on her.

Heading to the ER

Vomiting has continued and the Dr. wants us to head straight to the ER. She will most likely ave another shunt revision today. Please keep all of us in your prayers. The boys are not happy that their mom and sister will not be coming home again tonight.

I will update again as soon as I can.

November 11, 2009

More signs the shunt is malfunctionng

She still has a full fontanel
She was super sleepy today
She's started vomiting this evening

I'll be calling the Dr. again first thing in the morning. I know I need to get to sleep but I don't want to stop holding her. I just love her so much and my heart aches thinking of the discomfort she must be in.

PS - I don't have a picture but Annabelle looked so adorable today in the super cute jean/ladybug outfit that she got from her great, great cousin Rachel.

November 10, 2009

Oh what a day!

Branden and I both noticed that Annabelle's fontanel seemed to be "bulging" a bit, which is a drastic difference from her normal sunken in post surgery fontanel. Of course we were concerned since a bulging fontanel is typically indicative of a non-working shunt. It's been just about 6 weeks since her shunt revision and the the thought of going back in for surgery just breaks our hearts.

I knew that I needed to call Dr. Javahery, her Neurosurgeon and let him know. His immediate response this morning was to send her for a CT Scan. Although, I may complain (a lot) about how much we pay for our health coverage, I must admit that we do have good coverage for the most part. We are very lucky that when a Dr. believes that a procedure is necessary we always get approval and typically within a very reasonable amount of time. I have read stories from other moms in my Spina Bifida group that sometimes have to wait weeks to get an MRI or a CT Scan for their child. Waiting to know if your child is going to be okay or if they will need surgery is a very stressful thing and each day you are left worrying most be horrible. Thankfully our Dr. was able to arrange for Annabelle to get her CT scan today. We had to wait a little more than an hour because we were an "add on" to the schedule but we got it. Annabelle was very patient the whole time. She was actually cooing and just being a sweetie.

I don't think I will EVER get comfortable seeing Annabelle strapped down on a table with her head placed between cushions to keep it straight. Even though I knew she wasn't in any pain it was still very difficult to witness. However, in typical Annabelle style she was calm and composed and got through it perfectly or should I say GRACEfully :-) After the CT Scan we headed over to the doctor's office to discuss the results and have him take a look at Annabelle.

So, the results, well that's the tricky part. Her ventricles look good ~ in comparison to how they looked before the last revision. Although she felt a bit more full in the fontanel and pulseatile (his word) the shunt does appear to be working. Obviously, this is good news, right? Well, I don't think it's that cut and dry and truly either does the doctor. It's really going to be a bit of wait and see right now. If her heard circumference grows or her fontanel becomes more full or bulgy than we will need to have another CT Scan which will be compared to the one done today. This is exactly what happened last time. She had a CT Scan, all looked good. Three weeks later we were back having another CT Scan and subsequently having a shunt revision the following day.

So for now the decision is to move forward as normal. We have decided to not sit and worry ~ it's a waste of precious time and energy. Secretly I worry, but I am trying hard not to. My mommy instincts tell me that the shunt is either not working or at least not working optimally. However, until we know more there really isn't anything we can do.

Thank you to those who sent Annabelle and I prayers and positive thoughts today. It was a long day and I appreciated knowing that you were all right there with me. We left the doctor's office with 20 minutes to get ourselves over to Annabelle's physical therapy appointment at 2pm. Amazingly she did AWESOME! I had totally prepped the PT with how much Annabelle had been through and that we left the house at 10:30, excuse...but to both of our surprise she tolerated 50 minutes of PT.

That little girl is so strong and so inspiring. She brings us so much joy each day. We will certainly keep everyone updated on any changes in Annabelle's condition.

November 5, 2009

Reading before bed


Annabelle is typically asleep before we start the "bedtime routine" with the boys so she misses out on the nightly book reading. However, tonight she was wide awake at bedtime so she got to listen in. It was great seeing the three little ones with their daddy before bed. We hope she will develop a love of books like her brothers have.

Benjamin couldn't sit still long enough to be in the picture so I just got Jack and Annabelle this time. He's so wiggly sometimes video works better for him :-0

Too many stretches today!

I worked SUPER hard in physical therapy today and I wasn't very happy about it. Just check out my bottom lip in these top two pictures.









Today was a good PT session although Annabelle did cry a lot. She's building great head control and we are very pleased with her progress. They did find some tightening in her shoulders that we need to start working on ~ yes, that means MORE daily exercises! It's kind of non-stop, but we know that it's important. The concern with the tightening is that she is curving her torso a bit which could in turn weaken her spine. It's good they caught it now so we can address and correct the problem and prevent any potential future problems.

Check me out - I'm wearing jeans!

It's hard to get a good picture when you can't sit up yet, but we had fun trying. It really was fun, I just didn't feel like smiling on camera today.



October 31, 2009

Annabelle's 1st Halloween

Knowing that we would be spending the majority of Halloween night outside and that Annabelle typically is asleep by 7 pm we decided to not make a big fuss about her costume this year. I actually pulled together this pumpkin outfit at the last minute. I think she looked super cute and was most importantly warm. The hat was the same little hat that her brother Jack wore for his first Halloween (October 2005).



As expected, Annabelle fell right asleep and missed all the activity. She was however, all snuggly with her daddy and seemed super happy.


It was a great night being together as a family with friends. If interested, you can read more about the Summers Family Halloween by clicking here

October 28, 2009

A Tooth already!!

Looks like little Miss Annabelle is working on cutting her first tooth. She's pretty fussy (but still super sweet), drooling and gnawing like crazy on her little hands. It's exciting and sad at the same time. We know how quickly children grow and since Annabelle will be our last baby it's sad to think this is the last time we will experience all of these milestones. We are definitely trying to enjoy it all ~ in between the constant craziness in our home.

October 27, 2009

Pa's Pumpkin Patch

We took our annual trip to Pa's Pumpkin Patch this past Saturday. Unfortunately, this is the only picture of Annabelle. She was a bit sleepy and in the carrier most of the time. If you want to read more about that adventure please click here.

We look forward to really experiencing a pumpkin patch next year with Annabelle. I do really like this picture of the two of us. She just melts my heart when she looks at me like this.

October 18, 2009

First visit to the aquarium - October 18th


She turned to tell me all that she was seeing

So cute with her little bonnet on

The boys just LOVE their little sister

Our peaceful little sleeper - October 18th



October 15, 2009

Physical Therapy - October 15th

Today was by far the best PT appointment she's had so far - being awake really helped (he he)! Tangy, Annabelle's therapist was super pleased with the session and how well Annabelle did. She tolerated about 35 minutes of straight stretching and then she was DONE!

The best news of all is that Tangy felt (as we have for a while) that it was time to increase Annabelle's therapy to 4 times per month (once a week). So now we will be seeing Tangy every Thursday at 2:00 pm. We can't wait to see the wonderful progress we know Annabelle is going to make.







video

2 Month check up - October 15th

She is actually 11 weeks, but who's counting :-) Dr. McCormick was pleased with how well she looked, how her back and head have healed and her weight gain. It was a great overall visit. We (the Dr. and I) decided to wait a bit on starting Annabelle's immunizations until she gets the "official" green light that all is good with the new shunt from Dr. Javahery (the Neurosurgeon) who she will see on October 27th.

9 lbs 4 oz
20 1/2 inches
38 cm (head) - no increase (thank God) since the shunt revision surgery

We are truly blessed - there is no doubt about it!

October 8, 2009

Annabelle's two month pictures

I took Annabelle to Olan Mills Studios to get her two month pictures. They were a little late since she was preparing for surgery on her official birthday, but I figured better late than never.

We absolutely LOVE this one!

We call this her "sleeping Beauty" picture

I just couldn't resist her little fingers in this one

She was so cute - she slept through the whole photo shoot.