Friday, November 19, 2010

Every little bit counts...

Ava on the way into the hospital. It was still very early-6am-so she was in her jammies, snuggling her blanky and pillow, and watching Dora. Notice the lovely bib I had on her in case she got sick in the car-which she did not!
We made a trip into Boston Children's Hospital yesterday to see Ava's endocrinologist, Dr. Wolfsdorph. I was extremely anxious to see what her weight would be. I am happy to report that she gained 5 ounces in the last three weeks, making her 19lbs 9oz. To some, or many, 5 ounces does not sound like much, but for Ava this is a lot. I am not sure if it the rate at which she is gaining will be enough to keep her from having to get an NG tube, but I am encouraged at least that she is finally gaining something.
Her length is 32 1/2 inches, which was an improvement of an inch since we last saw him in July. He said that her height velocity (the speed with which she is getting taller) is within normal range so he is happy about that. Although, since her height overall is still so low for her age, we would like to see the velocity be even better so she can do some catch up. At this time, he does not recommend using growth hormone therapy, but said that we are going to keep a close eye on her growth, in case at some point we think it is something she should have.
The biggest problem with Ava's size is her weight for height. While we are wrapped up in the numbers, the reason is that we want Ava to be healthy. If her body is not getting what it needs to grow, it is probably not getting what it needs to develop and function properly. This is what scares me the most. The idea that Ava's body could be starving for what it needs and that we may not be doing everything that we can to ensure that it is. I basically told Dr.Wolfsdorph that this is my concern, and he said that for right now we need to concentrate on her caloric intake and that we are doing what we should be.
Overall, I would say that our trip and appointment went well. She gained some weight-woohoo! She also did not throw up in the car, which is a big deal since lately she has been vomiting whenever we are in the car for a period of time. I enjoyed spending the one on one time with her even if it was to go to the doctor. It is so funny being with Ava apart from her brothers and seeing how different her behavior and personality is. She was such a big girl holding my hand and walking into the hospital through the big revolving doors, marching up the big staircase and leading the way to Fegan 4 (this is the section of the hospital where her endocrinologist is). It is sad that my 2 1/2 year old knows her way around the hospital so well but at the same time it makes me proud to see her acting like such a big girl.
Ava on the way home. Sleepy but in good spirits.


Information on Dr.Wolfsdorph

Wednesday, November 17, 2010

Finding the Right Fit

As anyone who has a child that is at the bottom of the weight chart knows, it is very difficult finding clothing to fit our petite children. While I want Ava to grow and am excited when I see that her clothes are getting too small, I approach shopping for the next size up with dread. I know from experience, that finding the right fit is not an easy task. The pressure is increased because my little miss Ava seems already to be aware of her size, and objects to keeping on clothing that is "too big". If I put on a sweater or shirt and the neckline hangs off her shoulder or a pair of pants that tend to slide down she is quick to throw a fit. It breaks my heart when this occurs and so I do what I can to find clothing that really does fit her well.
This means that I cannot simply go online or to a store and purchase a certain size. After all, the size she is in is dependent on the brand, cut, and type of attire. For example, her winter coat is 18-24 months, but her Tinkerbell Halloween costume had to be 12 months. From my shopping experiences, I have noticed a some trends in how certain brands and styles of clothing tend to run. I thought I would share these observations with you in case you find yourself facing the same situation with your little one.  
When shopping for Ava, these are the things that I keep in mind...Baby Gap has adjustable waist jeans in 18-24 months so this is where we purchase her pants. Before she hit 18-24 months, finding pants was almost impossible as they would all fall down. Her finally hitting this size has been such a big help. I have found that Baby Gap's regular cut fits the best. The skinny jeans just emphasize her small size and the baggy jeans are way too baggy. For tops and dresses I tend to stick with Old Navy. Their tops seem to be cut nice and narrow for my petite girl, although many of them when they shrink seem to get shorter so this is something I am careful about. I like their dressier jackets as well. Their dresses fit pretty well but I have to be careful about the neckline. If it is a scoop or boat neck, then it will fall off her shoulders. For pajamas my favorite shopping spot is Children's Place. Their footy pajamas tend to be narrow and fit her very well. Although, recently I bought some from Walmart and they fit pretty well too. Another place I like to shop is JC Penney. They have great sales and I like the brands. The only thing is that it sometimes takes me a couple of tries to find the right size. I have noticed that Arizona and Okie Dokie brands, which are sold there, tend to run small. In the Okie Dokie, I actually bought Ava a little 2T thermal shirt and it fit her! 
All of us at a fair this fall. Ava is wearing her Okie Dokie 2T top from JC Penney along with her Baby Gap adjustable waist jeans.
In general, I have found that with Carter's I have to purchase a size smaller than what Ava is wearing in most brands. For example, at Children's Place I have been purchasing 24 months and Old Navy 18-24 but with Carter's the 18 month are still a bit big on her. My favorite Carter's items to buy are onesies. They are long and narrow and fit Ava perfectly. She is currently wearing Carter's 12 month onesies. Children's PlaceChildren's PlaceAs long as I take my time and be open to exchanging items, I can find some cute items.
Ava in a sweater from JC Penney, Sketchers sneakers from there as well, Baby Gap 18-24 month jeans, and an adorable hat from Old Navy.
Shoes are difficult to purchase as well because Ava's feet ar long and narrow. For sneakers I have found that Sketchers and Nikes tend to fit her the best. For dress shoes, it really is a gamble. I have to have her try on shoe upon shoe until we find one that is narrow enough and that the strap is tight enough. I have not found a particular store that has ones that fit, it seems to vary from season to season. 
For now, Ava's closet is fully stocked, but I am hoping that with the changes we have made in her medications and formulas that she starts to gain some weight and get taller causing her to bump up a clothing size! Luckily, each time I begin my search for the perfect fit it gets easier and easier because of the knowledge I gained in the past on where to find the narrower cut clothing. I hope that my sharing this information with you makes your shopping trips easier as well.

Here are links to the stores I mentioned above:
Old Navy
Baby Gap
JC Penney
Children's Place

Tuesday, November 9, 2010

First day on Peptamen Junior...

I decided to give Ava her first taste of Peptamen Junior with her lunch. I did half Peptamen Jr., half whole milk, and added in some chocolate syrup for flavor. It was a hit! She drank it right down without a problem. Then tonight I gave it to her in her bottle that she has before bed. She drank this a little more slowly as it was just the Peptamen. When we made her neocate, it was a powder and we added in a TBSP of rice to make it a bit thicker. The Peptamen is a liquid instead of a powder that you mix with water, so the texture is a bit different. I am wondering if it is filling her belly more quickly because it is definitely thicker than the Neocate was. If so, this could be why she is being so poky. She has been taking sips of it for half an hour and still has two out of four ounces left. When I prompt her to drink more she is telling me that her "belly sick". She says this quite often though so who knows. We'll see if she finishes and keeps it down!

Sunday, November 7, 2010

Anything but a Feeding Tube.....

The resident working under Ava's GI doctor called me to tell me that she was able to get the new formula, Peptimen Jr., approved with the insurance company. This was such a relief, as a case of it is $200 and Ava should go through two to three cases a month. While I was very happy that she had finally been able to get it approved, she said that in order to do so she had to explain to them that this is our last attempt before having to do a feeding tube. She explained to them that Ava is not gaining weight and in order to ensure that she is getting what she needs, if she does not start gaining weight in the next few weeks, a feeding tube of some sort is the route we are going to have to take. Even though I knew this to be true, and had already heard it once from her GI, hearing it again just made my stomach sick. I know that for some children who have been failing to thrive, a feeding tube does wonders for them, but I still hate to think of my baby girl having to have one. She has been through so much in her life already and would hate to see her with one. I am going to try to do everything I can to help her gain weight so that we can avoid a feeding tube. I am holding out hope that this formula will really help her. It should be in stock at our pharmacy tomorrow and I will start her on it tomorrow night. Crossing our fingers that she loves it and it helps her pack on some pounds...or at least some ounces!!

Thursday, November 4, 2010

The Chore of Getting A Prior Authorization

If you have ever had to get a prior authorization for a medication, you probably know what I am going through. I have been trying to get Ava's new formula approved through our insurance for a week! Before going to her GI appointment at Boston Children's Hospital, I tried to be prepared. I researched different toddler formula options as she does not seem to be growing on her current formula (she still gets formula twice a day along with other beverages and solid food) but cannot simply have milk because the calorie and nutrition content does not meet her needs. I then called our insurance agency to find out what I would have to do to get the formula approved. I was told to have the doctor fill out a prior authorization form and to have it faxed to the number on the top of the form. They said this would take care of it and that the formula would then be covered. I printed out the necessary form and brought it with me to the appointment feeling very organized and prepared. The doctor agreed with my choice of formula, filled out the form, and I assumed faxed it. However, when I got to the pharmacy back at home (1 1/2 hours without traffic from the doctor), and handed the prescription to the pharmacist, I noticed that the form was underneath the prescription! Instead of faxing the form Ava's doctor gave it back to me. This began a battle that has been going on for a week. The insurance company insists that the form must be faxed from the doctors office or that the doctor must call their prior authorization department and speak to a representative. I left two messages at the doctors office before calling back and finally getting a real person. I told her what needed to be done and she said she would take care of it. Two days later I called the insurance company to see if it was all set, was informed it was not, and called the doctor's office again. I spoke to a different person who supposedly was faxing the form as she spoke to me. I called the insurance company the next morning and they said they never received it so I called and left another message for the doctor. This was yesterday. Today I called the insurance company again and they said they still do not have it so I called and left yet another message for the doctor. When this will get resolved, I have no idea, but I hope it is before I run out of her current formula! I have three cans left. We'll have to see....

My recommendation for anyone else who has to get a prior authorization for a medication, take the form to the doctors and make them fax it in front of you!!

Wednesday, November 3, 2010

Periactin. The miracle we have been waiting for?

When we saw Ava's GI doctor at Boston Children's Hospital Thursday he was not happy with Ava's lack of weight gain. She was 19lbs 4oz. He did not even tell me where this puts her on the growth chart but I am sure it is close to the 1st percentile, if not off the chart for a child who is 30 months. He said that he feels it is likely that she has Russell Silver Syndrome and that it is important that we get calories into her whether that be by force or her own will. He gave us six weeks to get her to gain some weight and if she does not we are going to have to give her some additional feedings through and NG tube. When he told me this, my stomach dropped. Imagining my baby being forced to have a tube put into her nose and down to her stomach. I do not think she would leave it there and the thought of having to make sure she does breaks my heart. I asked him what he suggested we do in order to help her gain weight and he said suggested putting her on periactin. It is generally used as an antihistimine but its side affects include increased hunger and sleepiness, both of which help weight gain. I hate putting her on another medication, this makes four, but had to pick the lesser of two evils and adding another medication definitely beats out tube feedings. Anyways, we are currently working Ava up to her dose, and are already seeing it making a difference! She is definitely tired and irritable which is not great but her appetite is already definitely increasing! For lunch today she ate 4 1/2 chicken nuggets, 1/3 cup of applesauce with 2 tsps of her high calorie formula mixed in for added nutrition, 2/3 of a cheese stick, and 4oz of carnation instant breakfast made with whole milk. This is definitely the biggest meal she has eaten in her life! I am so proud of her and am crossing my fingers that it continues!!!


What is Russell Silver Syndrome?