ALL about ALAINAAlaina is now TWO (2) and a half. Everything is about the same as far as doctor appointments, and home therapy.
Alaina has always been so active, she loves to play, she runs faster than mommy, I can’t catch up to her sometimes ha.. She is very talkative, she says all of our dogs name, she loves animals.. She says mami and papi for mom and dad. She says grandma, grandpa and in Spanish. She says most of her aunt and uncles names. She talks a lot more now. I still have trouble understanding her sometimes but for the most part we understand each other :) She sings songs like "the wheels on the bus", "head shoulders knees and toes", and "keke do you love me" haha.. She is a character at this age. She still loves to dance! She is growing into an amazing little girl, it’s sad to say she isn’t a baby anymore (although she will always be my babygirl, now I’m just ranting excuse me ha). Alaina also has her own Instagram page where she recently began to rep small shops in modeling their clothes. She loves taking pictures, posing for the camera and saying cheese so why not. ------- Alaina is currently in her terrible twos.... (she is sooo bad sometimes :( ha ) but there is also times where she can be really sweet. It definitely takes a village to raise a child, thankfully I still have a really good support system and the everyone in the "village" loves Alaina. She says thank you and please, she tells me she loves me :) she also tells me when she's hungry and she rubs her belly at the same time haha. I have been on/off about potty training, I haven't been consistent so thats my current goal and to get her off her sippy cup soon (milk). She is definitely growing up, and its such a bittersweet feeling. (Cherish every moment while you can)
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When Alaina was in the NICU, and she was about to be discharged (she was a month old), I met a mother who had a son that had the same condition Alaina has: hypopituarism, adrenal insufficiency, etc. It was extremely rare and so unexpected to meet another child with the same deficiency, but it was also extremely helpful.. On the last day before the baby boy was discharged, I remember quickly asking the mother for her number and we have kept in touch ever since. It was an incredibly rough time in the beginning, getting hit unexpectedly with the news and with so much at once, but having someone to get advice from and to be able to ask questions and relate to was very helpful. So I've hit a memorable moment in my life this week, and I feel that it's something extremely important and heart warming to share with those keeping up with Alaina.
I've spoke to many parents since I've had this blog up. Parents all over the country, who have raised or are barely being introduced to this rare condition with their children. So the other day, I got the chance to meet with some amazing parents that came all the way from Europe to have labs done, appointments, everything that is needed for this condition, with their 6 month old baby girl Anja. I had been going back and forth emailing Mom, answering any questions she had concerning her daughter, and finally getting to meet her and the feeling of being able to help out as much as I can was very rewarding. Meeting her daughter and the family meeting Alaina was such a memorable experience for me. And that’s what life’s about, HELPING, ENCOURAGING, and being SUPPORTIVE. Because yes, you js may never know what a doctor might slap you in the face with. Being hit with this is very hard to deal with and accept. Sometimes the doctors don’t elaborate enough or can't give a clear idea of what the future may hold for our babies so, sometimes someone’s personal experiences can be very helpful in filling that void of questions someone may have. People tend to go online for sources, like myself, like I did in the beginning, and end up reading things that may freak you out. Some of the information could be actual facts, but the other percentage may or may not be true, and often times it leaves you wondering a lot of questions, and may lead to stress and just freaking out. If you feel you can help someone, and you have experience with something, whatever it may be just be HELPFUL, SUPPORTIVE and ENCOURAGING. This is the season of GIVING, so GIVE in whatever way you can! This is the beautiful family I met with. Alaina: 18 Months!It has been a couple months now that I havent blogged and I felt like it was necessary for me to speak on Alainas overall progession. Alaina is now 18 months! Woot woot! Alaina has 8 teeth now! A vocabulary and personality of her own She is so smart, she is just a fast learner. She tends to repeat what I say often times (123's) She has been walking since she turned 12 months She runs (walks really fast.. I mean really fast) ha Shes so adventeruous, she loves being outside She gets into EVERYTHING... Shes on whole milk, she drinks juice/water She loves chicken/fries She gives me kisses She's so silly She LOVES to DANCE She loves MUSIC (any music) MedicationsAlaina is still currently taking...
Growth Hormone Injections Hydrocortisone & has recently been taking Levothryoxine Alaina had an ophthalmology appointment back in late February. Her ophthalmologist was very impressed with her vision. She was 5 months when she had her 1st eye check up, she was not making any sort of acknowledgement, she could barely make eye contact. Last month she was 11 months when she had her 2nd eye check up and she has improved tremendously. So parents don't lose hope! A lot of stimulation and hard work helps as well, just don't lose faith so quickly.
Her ophthalmologist recommended for me to put a patch on her stronger eye (left) and work on improving or making her weaker eye (right/since she can hardly see out of it) and making it stronger! : For about 2 hours a day. I honestly never knew how bad her right eye was til we tried the eye patch. It really made me sad seeing her this way because she kept running into things, she didn't want to move, she just wanted to stay in one place, she always wanted me next to her or holding her hand. She was afraid, but we kept trying at it, she kept trying to take it off but we kept working on it. The first day we did 45 minutes because she kept getting frusterated. Which is okay for the first time, just got to boost it up to another hour atleast or try again later to get those 2 hours in. |
Hello, everyone, for those who are coming across my blog for the first time. I am from Houston Tx. My daughter was diagnosed with hypopituitarism, adrenal insufficiency as well as other deficiencies. There are so many things that result from these diagnosis. I made this blog to share my experience. After the years I have learned that these conditions are more common than I thought. You are NOT alone. WE are not alone. |