Looking for support

By now, I'm sure that most of you have heard the GREAT news . . . Alli is continuing to gain weight!!!! At her appointment with her GI doc last week, she weighed in at 19 lbs 8.6 oz. So all of you mathematicians out there now realize that Alli gained 2 lbs in 3 weeks ~ Woo Hoo! We are so thrilled, now if only we could get her to eat a bit healthier of a variety of foods, oh well, that's tomorrow's battle. For now, we are just so happy that she seems to be improving. Now, to be fair, she still is not a great eater, very picky and eats small amounts, but she's a small gal so we're not expecting her to eat a ton yet. We are a little nervous for when we have to take her off of the stimulant (6 weeks on, 2 weeks off). She has to go off of it so her body doesn't build up a tolerance to it. Although we have been warned that it could be stressful, we are trying to remain positive and hoping that she will at least not lose weight even if she doesn't gain.


We had a very touching experience at Children's Hospital at her last visit that I wanted to share. We were down at the lab because Alli needed to have her bloodwork re-checked. While we were waiting, Alli saw a little infant with her Mommy and was very intrigued. The other Mommy thought Alli was very cute and we began chatting while the little girls were watching each other very intently. Turns out the little one was 7 months old and had just received a heart transplant. You could just see the love and joy pouring out of her Mommy. We were absolutely amazed by this and were reminded once again how fortunate we are to have Alli in our lives. As we were leaving Children's that day, we saw a sign for a 7 mile walk to benefit the Hospital and we decided to sign up.

As you know, Alli has had difficulty gaining weight because of her aversion to food. We begged Alli's former pediatrician to help but were told that it was no big deal and she would grow out of it. Alli went from a healthy little gal who was in the 15th percentile to completely off the charts. Thankfully, in January, her new pediatrician (who we absolutely love!) referred us to Dr. Duro, a GI doc at Children's. Thanks to the wonderful folks at Children's, Alli is now eating and gaining again ~ even back on the growth chart at 6%. It's never fun to be poked and prodded but the everyone who works at Children's has been so great and made all of us feel like there is hope. We are working as a team.

Although we have nothing to compare it to, we think that Children's Hospital in Boston is a wonderful place, a truly unique hospital—one of the best pediatric institutions in the world, giving hope to so many kids and their families, constantly finding new ways to treat or cure an amazing variety of diseases. The doctors and nurses here never say "never" and they treat kids from all over the world. We're fortunate that we have insurance but some of the kids have families who can't afford to pay for their care and Children's takes care of them all! If you are interested in supporting Alli in her walk for Children's, please visit her Walk page.

Thank you! Your donation will make a difference in kids' lives, including Alli's :)

Woo Hoo!!!!!!!!!!!!!!

Alli had her 15 month appointment yesterday and it was AMAZING!!!! She is up to 18 lbs 13 oz and 31 inches. We were just hoping that she might hit the 18 lb mark finally, we never dreamed she would surpass it and almost hit 19 lbs!!! I cried when the nurse told me the weight I couldn't help it, I was just so excited. It was a great appointment all around. Alli only cried when she got weighed (go figure!) She was such a little champ during the exam and chatted the whole time. Although she has her own language and doesn't say a ton of recognizable words, her doc thinks she is right where she should be and was impressed by how well she understood directions ~ she showed him her belly, how she can shake toys, how she dances, how she can "pet" animals (he gave her a baby animals counting book) and she gave Mommy smooches when asked Here's the most impressive part . . . she got two shots (one in each arm) and our big girl didn't so much as wimper!!! That's right, she just looked at the nurse as if to say, "are you done yet? I want to go play." When we went out to the waiting room so I could book her next appointment before we left she played and flirted with the women at the front desk. The consensus in the office was "WOW! not a usual 15 month old reaction" She was such a brave little girl!!! I was so giddy yesterday that I couldn't stop smiling and crying ~ silly Mommy!

Another Giant Leap Backward

As I mentioned in our last update, although Alli had gained weight, she started refusing food and liquids again. Garrett and I were completely beside ourselves and decided we simply couldn't wait before seeking help again. We were determined to break this cycle so we attempted to contact Alli's GI doc last week. We reached out to her last Tuesday and had a response by Wednesday: "bring Alli in on Friday at 10 a.m." We were really nervous for the appointment, assuming that she had lost more weight, afraid she may be hospitalized, and concerned that we would have to battle to get help. We could not have been more wrong.


Well, we were partly right, she did lose weight. She's now at 17 lbs 7 oz so she lost 6 oz in two weeks. I have to say that while we weren't happy that she lost weight, we were relieved to see that we had hard proof of a need for further help. Alli's GI doctor is AWESOME!!! I truly think this woman is an angel sent by God to help us with Alli. When she walked into the room, the first thing out of her mouth was "thank you so much for contacting me for help, I'm so glad you didn't wait" What?!?! We begged for help almost daily with Alli's former pedi and were told that nothing was wrong, she would grow out of it, blah, blah, blah. We were made to feel crazy. Not with her. She even apologized again for the delay ~ she was in Brazil for a family emergency. She re-reviewed all of Alli's tests and they are negative, but she said that the RAST (allergy) test may not be accurate so if we don't see improvement, she will do an endoscopy and colonoscopy.

What was even better about this appointment is we have action. Like us, she found it interesting that Alli stopped eating two days after she stopped the Zantac. Garrett got really nervous when she said this, but she quickly erased his fears. She prescribed the appetite stimulant and another medication to treat reflux. It's not Zantac but apparently in the same family, just newer. We also need to continue giving Alli the Vit D, Vit E and Iron supplements. She asked that we call on Tuesday to check in with her to determine if we need to up the amount of the appetite stimulant. She also wants Alli back in three weeks to determine whether to schedule the further tests. Here is what also impressed us, she went to the scheduling desk with us and made sure that we got an appointment for exactly three weeks even thought the scheduler thought she was over-booked that day. We got the first appointment of the morning so there will be no problems :) She asked that we call her that afternoon to let her know the vitamin concentration. I was amazed, the number she gave us was her direct line ~ she actually answered the phone ~ WOW!!!

After a couple of days on the appetite stimulant (which is actually an antihistamine that has the side effect of increased appetite) Alli does appear to be eating a bit better. She is still not eating a lot but she is no longer violently refusing food and she will actually ask to eat, which she never does. It's pretty exciting but at the same time, we are afraid to get our hopes up since she does go through cycles of eating okay.

We truly believe we are going to get to the bottom of Alli's issues and we're going to get help. Praise God, the prayers are working!!! We know there will be difficult days but at least we know that we are in good hands. Please keep praying that the appetite stimulant works and Alli will not require a feeding tube.

Keeping us on our toes!

Where to start . . . As I mentioned in our last update, Alli and Garrett flew back to WA with Adele (i.e. Gramma) April 2nd to do some work on our new house.  Fortunately, it was not a full flight so Alli had her own seat but decided to stay awake the majority of the flight. Good thing she is such a good natured little girl or that could have been a very long flight :)  Alli does great traveling and adapting to new surroundings, thank goodness.  She was very happy to see her Gram and get reaquainted with the grandpas, great-grandparents, cousins, aunts & uncles.  She loved showing off how great she can walk and run these day :)  I flew in that weekend to help work on the house. We got a ton completed thanks to the help of our families ~ we are so lucky to have family members that know what they are doing when it comes to remodeling.

 

As you know, we bought a brand-new house so all we were really doing was adding "us" to the house. It originally came with wire shelving, which I detest, so as part of our purchase agreement, we had the builder remove all of the wire and fix the walls.  Garrett and my dad completed the coat closet, linen closets and pantry. 

 

We are having a company do custom shelving in the Master closet as well as a custom built-in office. We will have to work on Alli's closet and guest room closet on our next visit.  We also did a ton of painting. We went for earth tones in every room but Alli's.  The living room is a chocolate brown, the Master bedroom, bathrooms, and office are all tan, and the dining room (by far our biggest project) is an olive green with white wainscoting.

Alli's room is adorable.  We painted it spearmint green on top with green and white stripes on the bottom.  I have to thank my wonderful friend Michelle for the idea ~ future baby McDonald's room is blue and white stripes.  Garrett and I loved it and asked if we could copy them.  I had to return to work that Monday so Adele graciously offered to paint the stripes (I cannot say I was sorry to miss doing that!)  As you can see from the pictures, she did a FABULOUS job. 

All we have left to do in Alli's room is put up the chair rail. It was exhausting but fun working on the house and we are so anxious to move back there!!!

Now for the update on Alli . . . she's part of the reason that we're not sure when we'll be able to move. We need to get her eating and weight issues under control before we move.  Now that we have such a great team of doctors working to address these issues, we are hesitant to switch.  Alli had her follow-up with her GI doc last Thursday.  The GREAT news is that all of the scary tests came back negative and she does not have reflux so no more Zantac ~ she is thrilled about this.  She is slightly low on iron and Vit D so she's on a vitamin now that she does not love!  They are re-running one of the tests concerning her absorption of fat because the results were not clear.  She is up to 17 lbs 13 oz so she gained 7 oz in the last 3 weeks. This was a good thing (although it doesn't sound like much) because the GI doc said that if she had not gained, she planned to hospitalize her and place a feeding tube that day ~ WHAT?!?!  That made us nervous but thankfully, she gained.  Because she gained, the GI doc wants to wait another month before trying an appetite stimulant but agreed that if she does not gain substantially in the next month, we will begin Alli on an appetite stimulant ~ can we say "fat pill"? :)  We would like to just start it now but agreed to wait until her 15 month appointment to see where she's at.  We're praying she will finally hit 18 lbs!  The bummer is that she is working on more teeth and they are causing her so much pain that she is not at all interested in eating right now.  One step forward, a giant leap back. We'll see what happens . . .

We have hope!!!

Well, as is usually the case, things with Alli got worse, before they started to get better. After her weight loss, her pediatrician reassured us that it was likely a result of her learning to walk, which made sense to us because she seemed to be eating well. Unfortunately, right after that, she essentially stopped eating and drinking almost anything. She also decided she is way too independent for bottles ~ she's a big girl now. We were stressing quite a bit over this but figured it was just another bump in the road, until March 6th, when she started sleeping 20 hours/day. When she was awake, she was very alert and playful but did not want to eat and could only last about 1.5 - 2 hours. Once we realized that she was sleeping 20 hours/day, we called the doctor. Fortunately, Alli's pediatric office sees patients on Saturday and Sunday so we went in that Sunday. Because she was so alert while she was awake, the doctor told us she was fine but to check in the next day. Things got worse again, by that Tuesday, she was only taking about 4 oz/day so back to the doctor we went (poor Garrett was in FL for work and caught an early flight home). Alli's pedi prescribed her Zantac, thinking maybe she has silent reflux. The deal was that we would try it for a week but he would move forward with getting her in with a GI specialist at Boston Children's Hospital. Well, he worked very quickly because we had our first appointment with the GI on Thursday!!! She is running a ton of tests and we finally feel like someone is going to get to the bottom of Alli's issues and help her. Prasie God, we finally are getting help! We do not believe there will be a quick fix but at least now, we are working with doctors who acknowledge that there is a problem that we need to solve. The relief and hope we now feel is amazing. God really does answer prayers! We go back to Children's this Friday to meet with their nutritionists because our GI doc agrees that our past nutrition appointments were not helpful ~ she agreed with us that we don't need to hear that we are doing everything right, we need to analyze the data and formulate a plan ~ FINALLY! Alli will also have her Cystic Fibrosis test on Friday, fortunately, that shouldn't require any needles (poor Alli got my small veins so the blood draw last week was not pleasant!) We go back to the GI doc on April 10th. We will keep you posted on Alli. Please continue to pray for her.

It's been one of those weeks . . .

Many of you know of the uphill battles we've faced with Alli and gaining weight.  She's always been a little peanut but growing fine until last Fall when she got repeated ear infections.  She lost weight and we've been struggling ever since to get her to eat and gain.  We've been working with a team of specialists to address her low weight and had another meeting today.  In the past, the main advice we were given was to "relax" and things will get better.  Well, in the last month, we've tried to do that and thought it was working.  We could not have been more wrong.  Since her 1 year appointment on Feb. 4th, Alli has LOST 5 oz.  We thought for sure that she would be at least 18 lbs, but nope, she was less than she was 3.5 weeks ago.  I think the most frustrating part was they gave us absolutely no advice ~ just said that we're doing everything right.  Apparently NOT or she would not be losing weight!!!  I feel so helpless.  My one job as a parent (aside from loving her with my whole heart) is to feed her so she can grow and I'm failing miserably at that basic job. I have gotten as creative as I can and I am out of ideas ~ what do you do with a child that just won't eat enough?