Finally an update!

I know it has been forever since I have updated and for that I am sorry. Sometimes life moves so fast that you blink and 8 months have gone by!

Little Miss Isla

Failure to Thrive update:

We ended up seeing a different pediatric gastro and loved him. We had several different appointments with him and were very closely monitoring her growth. We also slowly introduced all the allergens we were avoiding in my diet and in her diet. She did absolutely wonderful with all the new foods. He was pleased with her growth and although she barely met his growth goals she did meet them. As of January 4^th we were released from the care of the pediatric GI and Isla was unlabeled Failure to Thrive. Her GI said she is just a tiny girl- skinny and short. She was given the go ahead to go on cow’s milk and she did very well with that. I continued to nurse her until a little after she turned 15 months. Now she is on a regular diet. Isla still struggles with weight gain from time to time but is thriving. She is not yet on the charts for her weight but she may never be and that is ok. She is healthy, smart, and very active.

Helmet update:

Isla got her helmet off in mid November! Her head looks great. She still has a little asymmetry but it is barely noticeable. She adjusted well to her helmet being off.

Developmentally:

Isla graduated from physical therapy in December. She has overcome all of her muscle tone issues and is doing great. She started walking about a week after her first birthday. Once she realized that she could walk she never looked back. Now she is running all over the place! She is soooooo active. She is non stop. Isla loves to climb, dance, run, and anything that involves moving. She is not one to sit still at all.

As far as her vocabulary she is super smart. She has tons of words. She likes to repeat words she hears often. She even sings “the itsy bitsy spider”. Her words include: mama, dada, nana, grandma, bow, dog, ball, bug, balloon, bubbles, book, bird, bottle, milk, cereal, blueberry, strawberry, blackberry, up, down, more, all done, what’s that, booger, nose, no, stickers and tons more I am forgetting. She follows almost all commands (when she is being a good girl J) She understands everything we say to her and answers if we ask he a yes or no question. She even recognizes who drives which car- if Trevor is coming home from work she yells “Dada” as soon as she sees his truck, same with my mom and her car and me and my car.

Lets not forget her super-sized personality. Wow. She is definitely her mother’s daughter! She is so strong willed and opinionated. She knows exactly what she wants and will let you know. She will literally walk up to you and take your hand and drag you over to do whatever it is that she wants you to do (throw a ball, pick up a book etc). If the dogs do something like take her ball she points her little finger at them and says “Nooooo dogs!”. She is such a girly girl. She loves her hairbows, purses, tutus, shoes, brushing her hair, putting on “makeup”, and anything girly! She hates getting dirty and will run up to you if she has even one speck of dirt on her finger and want you to wash her hands or wipe her down. She is seriously amusing and highly entertaining!

Update from 5/25:

Got a call from Isla’s daycare and they said she had a 103 fever. I took her to the doctor and she has an ear infection. This is her 5^th ear/sinus infection in 6 months and she is not responding to the antibiotics anymore. We were referred to see a pediatric ear, nose and throat doctor to discuss getting tubes inserted into her ears. For some reason her ears are not draining properly and the tubes will fix that. It’s kind of a bummer because she will have to have surgery but on the other hand she will not get these infections anymore so that is good. I am waiting for that office to call me back to make an appointment- I will update later. In the mean time she is on a very strong antibiotic which made her vomit all night last night. She seems better today so are hopeful that she will be able to keep the meds down so they can do their job.

Me and Trevor update:

I decided to go back to school for my nursing degree. I am so excited and just passed my first class back with an A! Working part time, going to school part time, and taking care of Isla will be tough but I think I can manage. I have lots of help. My family is amazing and always willing to pitch in, from paying for tuition and books to babysitting! I am so lucky. I honestly wouldn’t be able to do it all with out the support of my family. I love you all.

Trevor and Brent (his brother) started their own business, Sunstate Power and Solar Solutions LLC., a couple years ago and are getting very busy. They are such hard workers and great Daddys. They both work full time jobs and spend a ton of time working for their company. It is just the two of them and they have to make major sacrifices in order to be successful. I am so proud of both of them and I know that their hard work will pay off. It is hard not seeing Trevor as much but he makes up for it when he is here. He is such a loving husband and dad. I am one lucky girl!

Thanks for reading- sorry it was so long. LONG OVERDUE! I am going to try to update more often- promise!

"Failure To Thrive"

Today was the big appointment. Good news: Isla grew a ½ inch in a month. She is now 26 inches long (5^th %). Bad news: She has not gained ANY weight, not even a single ounce in a month and a half. Actually she probably lost weight but she had not had a bowel movement yet and after her weigh in she had 3 wet diapers in an hour. She weighs 13 pounds 8 ounces (not even on the charts). She was labeled as “failure to thrive” or FTT. We have a referral to see a different pediatric gastroenterologist- which is on Friday October 8^th. They will do a scope with a biopsy. We also have a referral to see an endocrinologist. My doctor will make an “emergency” appointment after Isla’s scope results are in.

There really could be a number of things wrong with her- we already know she has severe food allergies and colitis. On the gastro side it could be EE (Eosinophilic esophagitis), EC (esophageal colitis) or EG (esophageal gastritis). I do not yet know much about these conditions except that they all can cause malabsorption and are treatable. On the endocrine side it could be a growth hormone issue, a kidney problem, or a gland disorder.

We are in the process of figuring all this out. There will be many more doctors’ appointments to come and unfortunately more tests and procedures. The pediatrician urged me to go on FLMA and I already called my work to hopefully start the process- keeping my fingers crossed.

On a lighter note- Isla’s is on the high end of her age group when it comes to vocabulary! She says Mama, Dada, Book and Doggie! Well sometimes she says Boogie instead of Doggie! And she says all kinds of things that are unrecognizable. Developmentally she is doing great- she is crawling, sitting, pulling herself up to standing and walking along furniture- she can also stand unassisted for several seconds.

Isla also had her appointment with Hanger (the helmet people) and she is right on track! She has made great improvements and will hopefully get her helmet off by her first birthday (12/22).

*To be quite honest I am a bit overwhelmed with all this. I haven’t had time to digest it all yet, hence why this post it more factual and not so emotional. I just can’t gather my thought very well right now.

Not growing

I know I have said in the past that I LOVE my pediatricians and I really do. Isla sees 2 doctors- Dr. G and Dr. D. They are both Moms of toddlers and each work part time (they split the week). These women are truly amazing. I have so much in common with then (besides the doctor thing). There is also a medical assistant there named Kayla- she is the best. I am so lucky to have these women in my corner. They are a perfect match for the way that I parent. With all that is going on with Isla lately I can’t count the number of times that I have called or come in literally in tears- and they are always right there with me to comfort and reassure me. They are incredible- so supportive and encouraging.

On Thursday Isla had a pediatrician appointment. This time we saw Dr. G. We always start each appointment with a height and naked weight measurement (because of Isla’s weight issues). I am always so worried at this point. We put her on the scale and I nervously watched Kayla move the ticker on the scale until it was level- 13 pounds 8 ounces. My heart sank. In 9 days Isla had not gained a single ounce. We walked back to the exam room to meet Dr. G. We talked about all sorts of things (Isla’s diet, my diet, her chronic constipation, the GI appointment). She said one thing that made me feel so much better- she said it is not my job to make Isla grow. I am doing all that I am able to do- nursing her regularly, feeding her solids 3 times a day, giving her probiotics. She said not to blame myself and that I am doing a great job. I love her! We made a plan that if by her 9 month appointment (the end of this month) that if she hadn’t really grown then we would aggressively investigate. She will likely send us to a different pediatric GI to do an endoscopy on her. So far all of her labs have come back normal but there is always more tests we can do. I asked her what she thinks could be going on with her and she said it could be a number of things (a rare growth disorder, a kidney function problem, celiac disease, or she could just be super tiny). The thing is- Isla is doing great in all other areas. She has great brain development, she is meeting or exceeding all of her developmental milestones, she is alert and happy and super active- she is just not growing. She is at the extreme low end of the charts (like 0.5%)

So here I am, trying not to worry. Anxiously awaiting September 30th. I hate waiting. I am trying to remain positive but also preparing myself for what could be. Keep your fingers crossed that she grows. I will update after her appointment.

I will always trust my instincts!

I have always had a “motherly” instinct with Isla- I knew I was pregnant before I even missed my period. I knew I was having a girl. I knew she would come early. I knew she was sick. I have been spot on every time. So I should have listened to those same instincts after her GI appointment. I didn’t have a good feeling about this doctor from the moment he opened his mouth- I should have trusted my gut but I thought by not following his orders I would be risking my daughter’s health. So I formula fed Isla and stopped nursing all weekend- knowing that this was not what was best for her. I was a wreck all weekend- crying when she was hungry or ate, feeling guilty about breaking my “elimination breastfeeding diet”; I couldn’t even talk about it without tearing up. It felt so wrong- it was wrong. I just knew!


So I did some research online on different reputable website and reached out to a group I am a part of on a community board (Baby with Food Sensitivities/allergies) and I realized that I was right. So I made an appointment with Isla’s pediatrician- we had that appointment today.

This is what the pediatrician said: If I am willing to stay on this diet (which I totally don’t mind) then I can continue to breastfeed. They only sent me to the GI because they wanted him to see if there was anything else that was going on (we already knew about the food allergies and have been successfully dealing with it), not to re-diagnose and change the treatment plan. Also- the GI I saw in that particular practice is one that they do not recommend their patients to go see as he has had issues like this in the past. The pediatrician said Isla is gaining weight (albeit slowly) and she is obviously not malnourished and has great brain development and fine motor skills. They are more concerned with the fact that she is not getting any taller which could be a problem with her thyroid. They ordered a blood draw for 1- her thyroid and 2- an allergy screen. We did the thyroid one already today and will do the other on Thursday since it required too much blood to be drawn on a baby of her size in one day. We should get the results back in a couple days for the thyroid. The pediatrician also recommended that we start Isla on a daily probiotic mixed in a bottle to help her belly issues. She said that since Isla does not eat grains, meat or yogurt (due to her immature digestive system) that we should give her 2 ounces of formula in a “sippy cup” once a day as a snack. She also said that Isla nurses too often and not for long enough so she is only getting the high protein thinner foremilk- she is basically “snacking” and not emptying a breast hence not getting enough fatty hindmilk. So we will work on that. She reiterated that Isla should only have fruit and veggies (and possibly cheerios in month or two) until she is a year old.

Can I just say that I LOVE Isla’s pediatricians. They match my style of parenting to a T! They are so encouraging and helpful. I couldn’t be happier with them!

Bittersweet appointment

So today was the day of Isla’s appointment with the pediatric gastroenterologist. They started off by weighing her and checking her length. The results were unsettling: at 2 days shy of 8 months old she weighs 13 pounds 4 ounces (a 1 ounce increase in 8 days) and she is 25 ¼ inches long (no change in a couple months). The doctor examined her and asked me some questions. He then told me that he was confident that she has a severe food allergy to something I was eating that was making it into my breastmilk. He said that although breastmilk is best that he wants her to go on formula. But not any formula will work- only 1 kind is available for her and he said “it is very expensive”. He gave me some samples of the formula (EleCare- amino-acid-based, hypoallergenic formula that is specifically designed for infants and children with special feeding issues) - it is only available on their website or through special order through the pharmacy. It costs double or triple what a normal formula costs- and my insurance will likely not cover it! The doctor said that he wants to see her in a month to check her growth- fingers crossed that is works for her.

This appointment was bittersweet for me. The sweet: I am beyond happy that the doctor thinks Isla’s stomach issues are caused by a food allergy and nothing too serious. I am relieved that we did not have to do any invasive tests. I am hopeful that she will start to feel better. The bitter: I am heartbroken to have to stop breastfeeding. I was telling Trevor the other day that I plan to keep breastfeeding Isla past my original goal of 12 months. I love nursing Isla- the feeling of being so close to her. Breastfeeding makes me feel so bonded to her. It is something that only I can give her- it was the one thing that was all mine. I hate that I don’t get that anymore. I hate that the choice was made for me. I am not ready to stop but I have to follow the doctor’s orders. I feel guilty (although the doctor told me it is not my fault and that I should feel proud and not guilty because most Moms would not go on such a strict diet for such a long time like me) that her stomach problems were caused by something I did. I feel uneasy with the decision to stop breastfeeding- right now I don’t feel like it was the right decision for my baby although I am sure this feeling will pass. I wonder if the doctor is right. It doesn’t help that after feeding her formula for the first time tonight that she spit up 4 times (not like Isla at all to spit up) and was grunting and growling in discomfort. I hope it is just gas but wonder if I made the wrong choice. Before I was confident in the decision to breastfeed (even on the strict diet) but now I feel so unsure. I am just taking this day by day and hoping for positive results and hoping I start feeling better about everything.

Our next appointment is September 27 (my wedding anniversary) and we are hoping she grows! Please keep Isla in your thoughts! Love you all!

Children's Miracle Network Radiothon

Each year Tucson Medical Center and the Children’s Miracle Network host a radiothon to raise money for the different departments of TMC that cater to children (peds, NICU, pediatric therapy, children’s ER). Being that my mom works at TMC- I would usually help out as a volunteer (answering phones, setting up, training other volunteers). This year I was invited to participate in it again- but this time not as a volunteer but as one of the featured families! Isla and I (and Trevor too if he can get off in time) will be on the radio telling Isla’s story! We already went to the radio station and did our pre-recorded interview and we will do our live interview on air in a week on Thursday August 26th, 2010 at 4:00pm. We are so excited and nervous too!

Isla was born at TMC- though it is not the closest hospital to my house it is my OB’s hospital. Isla also goes to TMC’s pediatric therapy. I have always known how important the radiothon is to the hospital since they are a non-profit hospital they rely on donations but I never thought I would utilize the very services that the radiothon raises money for. The money raised stays at TMC and is spread among all the units for children. I am so thankful for TMC’s commitment to children and can’t imagine if the Pediatric Therapy unit did not exist. I hope you all listen to us on the 26th and I encourage you to call in and make a donation (you can make it in honor of Isla!)- you never know when you yourself may be in need of their services just like me.

Here is a little bit of info on TMC and the radiothon:

** TMC for Children includes the region’s only dedicated Children’s Emergency Center, the only pediatric hospice, the only pediatric special care unit, and the only pediatric Gastrointestinal Laboratory. TMC for Children also includes inpatient and ambulatory surgery programs with dedicated pediatric anesthesiologists and child-life specialists. And, TMC for Children includes the hospital’s acclaimed Newborn Intensive Care and Pediatric Intensive Care units.

**Children’s Miracle Network is an international non-profit organization dedicated to raising funds for 170 affiliated children’s hospitals. Over the past two decades, local Children's Miracle Network campaigns at TMC have raised well over $10.6 million, all of which has remained here in Southern Arizona to support TMC children’s services.

**Tune in to 92.9 The Mountain from Aug. 25-27 for Jennie & Chris's Mountain of Miracles Radiothon benefiting TMC's Children's Miracle Network. Listen to the live three-day broadcast from TMC's Children's Emergency Center and call in to make your donation to the Children's Miracle Network.

Tight neck, flat head- HELMET!

At Isla’s 2 week appointment her pediatrician said she had tortocolis, plagiocephaly and brachycephaly. She said it was from how Isla was positioned inside me during my pregnancy. She gave us a handout on how to do neck stretches.

**Tortocolis is when the muscles in her neck are wrapped to tightly around the bone causing the head to tilt to one side. Tortocolis cause plagiocephaly and brachycephaly.

**Plagiocephaly is when the head is flat on one side (the opposite side of the tortocolis neck. The flattening of the head causes the ear on that side to become pushed forward and is usually lower or higher than the other side. It also causes the bones in one side of the face to push out as well which can affect the jaw, nose and eye from working properly.

**Brachycephaly is when the head is wider than it is long which basically just makes the head look funny.

So Isla has all three of these conditions. We did the stretches at home as well as we could since we only learned how to do this off of a handout. At each appointment her pediatrician mentioned to keep up on the stretches and said if it didn’t improve enough she would have Isla in physical therapy. We were diligent in doing the stretches but by the 4 month appointment her condition had only slightly improved so we were given a referral to a physical therapist.

We started physical therapy right away. The physical therapy is located at Tucson Medical Center (where Isla was born and where my mom works). On a side note TMC is probably the best hospital in Tucson. The care they provide is amazing and they have a focus on children- and they are a non profit hospital. Isla’s therapist is Charlene and she is amazing! She taught me so much about Isla’s condition and how important the physical therapy is to her development. Unless you experience it yourself you have no idea how involved the therapy is and how it affects everything she does. Not only do we take Isla to TMC regularly for therapy but we do it at home all day, every day. We can’t skip days because as she grows her condition will worsen. So we do the physical therapy daily to keep her muscles from getting tight around her neck. Isla’s condition also affects her development. Without regular therapy she would favor one side of her body causing the other side to become weak which will prevent her from rolling, sitting, crawling, standing and walking. This is why it is so important to do therapy everyday and to make it a part of her daily routine. With Charlene’s help Isla is rolling both ways, sitting like a pro and army-style crawling- we are working on getting her on all fours!

The physical therapy has done wonders for Isla’s tortocolis but has not improved her plagiocephaly enough so we were referred to a cranial orthotic specialist (aka the helmet people). Isla was fitted for a helmet and is currently wearing it now. She will wear it for about 4 months for 23 out of 24 hours a day. We only take it off to clean it and to clean her. The helmet works with her growth spurts. The helmet is symmetrical- it lies against the high spots on her head and there is a gap over the low (flat) spot. So as she grows her head will fill in the gap and become symmetrical.

I know this is a lot to take in but I feel like I must educate people about her condition. Please feel free to ask me any questions- I am happy to explain. I want people to know that when a baby is wearing a helmet it is not just for cosmetic purposes- it is a preventative measure for future developmental and medical problem that come along with having plagiocephaly.