Two Years Old!

Today my baby turned two. I was anticipating being sad - two years old, already, where has the time gone? Today came with a whole different set of emotions instead. I'm happy - she has turned into the most adorable blond curly haired, blue eyed, chatter boxed little girl. We've come so far and I still go by the motto "Life gets a little easier every day", which was my motto from day one of bringing my new baby girl home from the hospital with a just-turned-two year old at home as well.

Last night I glanced at the clock and the memories of me thinking maybe I should go to the hospital three weeks away from my due date came to me. I was monitored for contractions and the next morning decided that it was time to do my repeat C-Section. Tonight around 5:00 I was thinking back to where we were at THAT time two years ago. I was laying in a hospital bed, unable to move much of my body and in pain. I had no real idea of what was going on, I was far too out of it. My baby was in the warmer still, on oxygen, struggling to keep her O2 sats up. My only thought was "if my baby is going to be transferred out of here, I'm going to find SOME WAY to get out of this bed and go with her." She's been a fighter from the start!

Last year at this time we were a mess! After our horror GI visit at 8 months old, we'd barely been hanging in there. I had just recently weaned her  from breastfeeding and we were "experimenting" with some sort of a formula she could tolerate. I knew that at one year we'd have an allergist appointment so we held onto hope. We went from Enfamil to Nutramigen to Soy Milk, all with no progress. Shortly after Kara's first birthday she went on a total elimination diet, which meant taking ALL foods from Kara and finding a baseline on Neocate. I'd never even HEARD of baseline before, let alone had any clue of how we were going to manage. What was to come were the best weeks Kara has ever had! Neocate, followed by corn grits and kix cereal became her only food, slowly having bananas mixed in for some flavor. We have, in the last year, added 18 foods to Kara's safe food list. Each trialed roughly a week at a time, sometimes shorter, sometimes longer. It's been a long year, full of ups and downs but we have made major progress looking back at where we have been!

Kara Lynne, you will never cease to amaze me. Life is sometimes a struggle but in my eyes you are nothing but a fighter. You put a smile on my face every.single.day and my life is that much more complete with you in it. I love you Baby Girl, my Little Diva!

Birthdays!

April and May are full of birthdays in our families and yesterday we celebrated Brenna and Kara's birthday's together since they are only ten days apart. I was so excited for Kara to have a birthday cake! I have a friend who is an AMAZING cake decorator and she agreed and was 100% willing to make a cake that would be perfectly safe for Kara! We did a lot of messaging back and forth, many ingredients list checking and found a dairy free cake mix. Since Kara can have eggs, that worked out fine and her safe oil is canola. Perfect! Tara made a frosting for Kara out of her dairy/soy free "butter" spread and she does fine with dyes (so far!) so we did another check and double check of the ingredients in that, and it all proved to be safe!

Kara, our little bug, had her very own birthday cake! She loved her cake so much that she wouldn't even look at the camera and in true almost-two-year-old fashion, never sat still for one decent picture! I'll give it a shot on her actual birthday I guess.

Balance

We've had a busy few weeks with appointments and decisions to be made, as well as Kara not feeling well again. I'm having a hard time balancing work and the never ending care of a child with health problems. I'm struggling with being fair and having the time to give to my curious, wanting to help with everything, sassy, almost four year old as I'm overwhelmed with life as it is. I'm struggling with the balance of getting everyday things done around my house as I have an almost two year old mommy's girl that just wants to be snuggled.

Thank goodness the sun is finally starting to shine and it's starting to warm up. I'm hoping that with spring hopefully finally here things will start looking up. I know we have a really busy and stressful next 4-6 weeks ahead of us with appointments but I'm hoping now that we are getting it all on the calendar we can go back to day to day life instead of not knowing what the future is going to bring. I HATE not being in control and need to get back to the balance of my life that I thrive on.

Sleep Study Dilema

Yesterday I was awaiting an important phone call from Gillette for Kara's sleep study. I walked out to my car on my break at work, and my phone (that has no service in my office!) picked up a voicemail. I quickly listened, writing down the message on the sticky notes I brought out with me. June 14th, the first available date, is the day they had her scheduled.

I instantly felt defeated. We can't schedule the surgery until she has the sleep study and just on Friday we were back in for both ears being infected and now we are still watching for symptoms from the antibiotic.

I wasn't sure what to do first. I called the scheduler at Gillette back, no answer. Next I called the assistant who transferred me to the Nurse Coordinator. I left a long, detailed message explaining when they could get Kara in for the sleep study, that she has yet another ear infection, and is on more antibiotics. I asked if we could forgo the sleep study and forget about tonsils if that's what the doctor needed or if he would just take the tonsils, since they'll probably have to come out eventually anyway.. I waited not-so-patiently for a call back.

About an two hours later my patience got the best of me. I called the assistant again, re-explaining our situation and she transferred me to the triage nurse. The nurse was kind, I explained my thought process and exactly what I wanted from the doctor. She let me know he was in surgery today so they will talk to him tomorrow afternoon. I thanked her and asked for the assistant once again. We can get in for surgery as soon as May 23rd if he'll let us bypass the sleep study.

Without going into a huge explanation of my thought process on this, I weighed everything out trying to decide what was right. I also looked at the explanation booklet Gillette provides to children having a sleep study done. As soon as I was got through it I was sickened. Kara cries if she has to have a bandaid on! I think that last hospital stay wrecked it all for her with her sore, swollen feet hooked up to the pulse oximeter on one side, the IV in the other. Putting her through something as scary looking as this, even though it's painless breaks my heart!

Brian and I discussed our (lack) of options last night not real sure what the heck we should do, or what the doctor would even let us do. It was a waiting game until today.

Third Times a Charm

Because two doctor appointments weren't enough for this week, we went in for a third on Friday.

Kara was pretty fussy when we got back to reality on Tuesday night and her crankiness continued through the rest of the week. We kept it in the back of our heads that she had that fluid in her ear and by Thursday night I was ready to bring her to Urgent Care because she was SOOOO crabby. She wasn't acting sick just really ornery and wanting to be held. I was planning on going to work on Friday to make up some time, but plans changed, as they often do at the spur of the moment lately.

Kara was up all night coughing Thursday night. I felt so bad because it's such a nasty, dry cough and it sounds so painful. Before she had even woken up, I decided it was time to bring her in and that we wouldn't be following with our plans for the day. We got an appointment right away Friday morning, and with that, found that Kara now has an ear infection in both ears. Her cough is a nasty, inflammation cough. We are keeping up with her nebs, the albuterol and budesonide (Pulmicort) and she is actually asking to take them, like she is finally noticing that they help her out and aren't just there for us to torture her with. It's kind of sad, in a way, but much easier than the two of us trying to hold her down to Neb her!

Kara is now back on Amoxicillin. So far it's going decent, just causing some slight gut issues and I'm hoping that we can continue it. We are aiming for ten days but need to get a full five in her for sure and hope that it clears the infection. By this afternoon she seems to be feeling better so hopefully she doesn't slide into a GI reaction and spend the rest of the week sick after one day of ear improvement!

When it rains around here, it pours.

Ear, Nose and Throat

Tuesday was our long-awaited ENT Appointment. At Kara's Allergy Appointment on Monday the Allergist said that Kara did have some fluid in her right ear. I was REALLY thinking and hoping that this extra day off, day spent in the cities at another appointment was going to be nothing but a waste of time since she's been ear-problem free for a little over a month! This was not really what I wanted to hear but at least the big appointment was just the next day.

We got to the U of MN and checked Kara in for her Audiology Appointment. They did a hearing test and then another test to measure the fluid amounts in her ears. The hearing test is NOT the easiest test to do on an almost two year old! She had me a little worried because I could clearly hear some of the noises they were playing and Kara wasn't responding by the end of the test - the whispers and things like that. The Audiologist assured me that she did perfect in the beginning, but in true two-year-old fashion, quit playing the game about half way through!

With that, waited for our ENT appointment. We seemed to have to wait for an awful long time and Kara was getting very impatient, not to mention, tired! We settled on a bottle about the time the resident came in. She took Kara's full history, finding it interesting and asking many questions. She did a quick exam, finding the fluid in both ears and went to get the doctor.

We spoke about Kara's ear fluid and infections that's been a constant since about December. He said she is definitely right at the point of making a decision on getting tubes put in, but we could wait it out another month or so to see if she does get better with the weather. Brian and I discussed ahead of time that we would at least ask him about Kara's adenoids. Brenna, Kara's older sister, had her tonsils and adenoids out when she was two years, four months old, a big decision that we had to make but since making it, she hasn't been sick a single time. He was curious as to why we did hers so early and when we described what the ENT told us after Brenna's procedure, he checked her throat out as well. He decided that he would do tubes and adenoids for sure and then we went on to talk about her mouth breathing, snoring, basically all the same problems Brenna had except for the chronic tonsillitis. This is where the conversation got confusing, and a bit overwhelming.

This is what's going on:
If we are going to put Kara  under anesthesia again, we should find out for sure if her breathing is causing sleep apnea and get those tonsils out right away as well if she is having sleep apnea. If we don't do this, there's a good chance that in the next six months or so she could need to have them out which would mean putting her under anesthesia again. We are waiting on the scheduling of a sleep study at this point, which we will hopefully hear on tomorrow so we can get these things on our calendar. The sleep study will be done at Gillette Children's, as this is one of the things they specialize in. (When we are finished with all of this FPIES business, I swear, we will have been at every hospital/clinic in the metro!)

For those of you that weren't following last October, Kara's scope caused a reaction of some sort, and because of this, she's a high anesthesia risk. This is why this non-invasive procedure is being taken so serious and we are doctoring at the U of M for this as well. These are the blog posts about that experience: Phase 2, Inpatient, as well as a few others in the October 2010 blog archives. Basically, after all of this, Kara had a Holter Monitor, a Cardiology Visit, another EKG and we still don't know exactly what happened. To be on the safe side, when Kara has her ear tubes placed as well as whatever else is decided, she will have prophylactic steroids to (hopefully!) offset any chance of reaction as well as be admitted to inpatient upon the surgery so we aren't hanging around in Phase Two again, wondering what the heck is happening.

It looks like May is going to be a busy month. I'm ready to get the show on the road so we can enjoy this summer!  

Update: Allergy

There was some confusion with my Allergist post and I need to clarify some things regarding Kara's dairy allergy.

We were told that the RAST blood test numbers can range from .01 to 100. Kara's level is a 1.75. On a scale to 100, that's very minimal. She did have a positive skin prick test but there's a good chance that she could be able to handle dairy in baked foods, so his suggestion was to trial it in a piece of bread. It is nearly impossible to find a safe bread for Kara anywhere within a 60 mile radius. When I get to Maple Grove, two hours away, and IF they have her bread in stock, I buy a few loaves and freeze them. Bread is a rare commodity for Kara. So, basically I would use my discretion as I have with her and the minimal amounts of soy oil that she gets in her diet.

Our Allergist said IF she reacts, it will most likely be an FPIES reaction to dairy, not that she'll have an IgE reaction, which is a "typical" food allergy reaction. So, it's a shot in the dark, as all of our food trials have been. Dairy is on "the list" but so was chicken, eggs, and a few other foods that she's passed.

When the time is right, we'll trial dairy in the form of a piece of bread and be very careful, watching the clock that first day and watching for build reactions as the days pass.