Life's a Breeze

Sunday, June 17, 2012

One of those day...

Today has been one of those days where I wish I had another PKU mom friend to just talk with. It all started with my dream I had last night. I dont remember the details but the gist of it was basically the world as we know was ending and that included how I got Breeze's periflex formula. What would I do with out it? How would Breeze become if she didn't have it? These are very scary questions for me and this dream made me face one of my biggest fears. What if we could not get her formula? The "healthy" way I eat is not healthy for her, and today, that makes me sad and frustruated. I dont want to feel this way and I considered not sharing this post,but reality is, this is not always easy for me. Reality is, I get upset still, I get sad and it is hard. I have always wanted this to be a positive blog about PKU, but also I want it to be real. What is real? My daughter has PKU. There are lots and lots of foods for her to eat. She is really healthy and really happy, and,I have a very large basement to hold lots of periflex formula stores.

Side note

After reading this post, if you feel any sort of sadness towards me please feel free to read the post'Please dont tell me your sorry.';) I,just like any new Mom, have had one of those days. And I feel better after telling you all about it!

Saturday, June 16, 2012

I'm Back

Back from what you may ask? No I have not gone on any fabulous trips as of late, I am back from spring craziness! Although I am no longer doing my garden maintenance business I did do a few annual jobs, four to be exact, to make some extra cash. So it may not seem like much but it took quite a bit of juggling. All the while squeezing in family visitors, brief couch surfers and normal house hold /baby duties. I am back(!) and today after putting Breeze down for her nap I actually thought to myself. "What should I do now?" I didn't have a million things to do before she wakes up. Ok well there is laundry, but its down stairs and easy to ignore!
In my last post Breeze was almost 6 months and we were about to leave for Florida for 10 days(yes it was as good as it sounds!) She just started to to eat solids. Well I am happy to say that Breeze eats all kinds if food! Anything I give her she eats, it truly is a blessing! Lets just pray that it continues. I stopped giving her rice cereal cause she just didn't like it. I tried it, terrible stuff. So I switched to the oatmeal, which is good and started adding fruits to it. I follow the four day rule, a new food every four days in case of a reaction. So as of now she has had mango, blue berry's, banana, pears, peaches, yellow, acorn, butternut squash, sweet potato, roasted garlic(yes really), white potatoes, brussel sprouts, apples, cauliflower, So delicious coconut yogurt,avocado, prunes..I think that's it. I am always looking for something new, oh and cinnamon! Yes she ate it all and with gusto. Next on the list is beets! I have been using this great website called www.wholesomebabyfood.com tons of great information.
So giving Breeze solids is the same as starting any other baby on solids, as you can tell from the list. Although I am giving her the coconut yogurt instead of dairy. You don't see peas on the food list, nor will you. They are very high in phe and not even worth giving. The goal right now is to give her 60 mg of phe a day from solids. I use my scale and I weigh out food for her meals and write in down in a log that I have. So for example for breakfast this morning she had 1 gram of oat meal(6.3 mg phe/g) 30 grams of mango(.17 mg phe/g) and 32 grams yogurt(.16 mg phe/g) So then I just calculate the grams times the amount she ate for every item and add it together to get her total phe for the meal. So that meal was 16.5 mg/phe so now we have 43.5 mg left to get from food for the rest of the day. Now one thing to remember is there are no emergencies with PKU, and if she is still hungry and she has had all her "allowed" amount from food, I don't cut her off. She leads the way in this journey, if she starts eating more I give her more and we bump up her allowable amount from food. Nursing and formula will adjust themselves. But it is still very important(as it always will be) for her to drink her formula, and breast milk. So she gets that first.As you can tell it would make things more difficult if she was a picky eater or wouldn't finish food she has started cause I would have to recalculate.
Since starting solids her levels have been with in range to even a little low. I am going to start doing the blood draws myself so we no longer have to go into the hospital. Over all Breeze is doing great. Her little personality is blossoming and she is very talkative and happy. She is so much fun and I am lovin every minute of it! I think I hear her now...chatting in her crib.

Saturday, March 31, 2012

This and That

So it has been a while since I have posted...sorry! But it is spring time and our lives always get busy this time of year. Breeze is doing great. Though her levels have been high the past two weeks, which is a bummer, but all we can do is up the formula intake and check again next week. She is growing, and eating more and more. She is just about 17 pounds now and in 9 days she will be 6 months old! She is sleeping about 12 hours at night, yah! But she has always been a good sleeper. The weather has been amazing this spring so we have been going on daily walks outside. Breeze loves the carrier so I wear her all the time. I LOVE my carrier! The brand I have is Freehand, designed by a local couple, it puts her into a very comfortable sitting position which is good for her hips, well I guess I should say not bad for her hips. We have also been going to this great indoor water park to go swimming. Breeze loves the water, but that is not surprising since her father does too! Breeze is getting very strong, she has lots of tummy time, and practices sitting on her own. Although she still just tips over so she needs a soft landing! She has rolled over, twice,and seems not interested in doing it again! We also have started using American Sign Language with her. Which is fun for us to learn as well! We are using the Signing Times series of videos.
Today was a big day for Breeze, she tried rice cereal for the first time! She did not think it was so exciting, she didn't know what to think actually. But I was excited for her. She didn't seem to like her Johnny Jumper that much at first and now she loves it. So we will just give it time. Since she does not really eat that much of it I did not have to count it towards her phe intake for the day. I mixed it with formula, not breast milk. We have an appointment with Casey, our dietitian, on Monday to learn all about starting solids. I spoke with her on Friday and she said that I could go ahead and try the cereal over the weekend. So, more info to come about solids!
So I have been feeling the need to interact with other PKU moms for a while now and finally I got in touch with one who lives in the Denver area! She is heading up the effort to start a PKU non profit here in Denver. So I am going to join efforts with her. She has a daughter who has PKU, she is 16. So I am excited to meet them. I willl keep you posted better I promise!