Wednesday, April 28, 2010
Towards the end of therapy today, Miss Peggy said to me, "I've got some news". Me (trying to be funny), "Let me guess, you're leaving"? Miss Peggy, "Yes. I am leaving the company. May 14 is my last day". Me, no response, with my mouth hanging open. She went on to explain what she was moving on to do, and that her replacement has 16 years of experience and we will be in great hands. When the ability to speak returned to me, my only responses were, "Aw, man!" and "good for you". But inside, I was already trying to control my tears.
ARE YOU KIDDING ME?!? What the hell?!? Everytime I think we're on the right track, God throws us a curve ball. I am so pissed right now. Not at Peggy- I could NEVER be mad her, but at the situation. We LOVE Peggy and it just plain sucks to have to make a change right now. I cried the entire way home today after therapy. I know God has a plan & a reason for this change, but I don't understand why, and I NEED to understand why. I've been angry and frustrated for so long with everything that's gone on with Juliana, and I was starting to finally lose some of that anger. Well, the anger and frustration are back, and I guess I need to start working on it again.
Today my little girl turns one. I'm not going to lie, it's been a long and rough year for us. I've reached my breaking point more than once, and I have never been this stressed out in my life, but I wouldn't change it for the world.
Juliana, you are a my little trooper. You've met your challenges and motored through many of them. You don't cry no matter how many strange doctors we take you to, instead you flirt with the male doctors. You never cried any of the times they drew your blood. You love Miss Peggy, your feeding therapist, and bounce up and down every time you see her. When you feel like no one is paying attention to you, your cry/yell more than makes up for your small size. You love your brother, and even though you aren't crawling, we can see that you want to do everything that he does. You have your grandpa wrapped around your tiny fingers. I don't think Grandma Vicki even gets time with you if Grandpa Jim is around. Your cousin, Rori Rose, is dying for you to play princesses with her, and Auntie Jaime slobbers on you as often as she can. Our special house guest, Holly, loves you as well, and has learned to take out her earrings before she plays with you. Theresa is happy to have a little girl to watch every day, and I think she secretly hopes that you will be a girly-girl.
I want you to know that your daddy and I are doing everything we can to help you down this rough and bumpy road. Hopefully the early intervention will get you caught up quickly, you catch on quickly and are always watching everyone and everything around you.
We love you very much, little girl. Happy Birthday!
Tuesday, April 20, 2010
We filled out the paperwork, talked to the anesthesiologist, who told us that she would put the IV in after Juliana went to "sleep"- they put a mask of gas over her mouth to knock her out. Then, Dr. Smith came in and talked to us and flirted with Juliana. He told us it would take about 15 minutes and then she would be back with us. Then, they whisked her out of the room. Ryan and I settled in for the wait.
While we were waiting, one of the nurses came to tell us that Juliana had done a real good job. She had fought the gas but had finally "given in" and fell asleep with her giant cow stuffed animal tucked against her. We then watched as a few other parents were taken into their rooms with their babies to wait for their endoscopies.
All of a sudden Juliana was back in the room with us. Dr. Smith came in and told us he didn't find any ulcers or irritations, but had taken some biopsies to check for microscopic irritations. The anesthesiologist told us she did really well, but we needed to keep her hand with the IV away from her face while she woke up. What no one mentioned to us, was that often times, when babies are "waking" back up, they can cry or scream uncontrollably, which is what happened next. Juliana started to cry and cry, and then it turned to screaming. She was screaming like she was in pain, and no matter what Ryan or I did, she wouldn't stop. I'm not going to lie, it scared me. Finally, they took out her IV and the screaming turned back into crying. She wanted Ryan to hold her and Ryan was doing his best to soothe her and he was able to get her crying to quiet down. Eventually, Ryan and I were able to get her dressed again. They wanted us to put her in her car seat and carry her out, but I preferred to carry her out.
Juliana fell asleep on the way home, so Ryan brought her up to her room and left her in her car seat. She slept for several hours. We were able to get her to eat some solids, but she didn't eat well for the rest of the day- for obvious reasons. She ate well today, but then projectiled as soon as Ryan took her up for bedtime.
Thank you for all your prayers. We greatly appreciate them.
Monday, April 12, 2010
Juliana will be having an endoscopy on April 19th. One of the 2 gastroenterologists that we see recommended doing one, while the other said it was not needed. After discussing the options with Ryan, and Peggy, our feeding therapist, Ryan and I are going to go ahead and have it done. I was on the fence with my decision, because I hate the idea of sedating my 11 month old, but we do want to make sure that we have explored all possibilities of why she is not "thriving". Please keep us in your prayers next Monday.
This past Friday, Juliana had her evaluation for Early Intervention. Peggy had given me an overview of how it would play out, but unless you've sat through one, you really don't know what to expect.
Four therapists arrived at our house at 1 PM on Friday- speech, occupational, developmental, and physical. Fortunately, one of them was Peggy, who ironically is also an Early Intervention evaluator. They proceeded to ask Ryan and I questions and try to get Juliana to perform certain tasks. I liked all of the evaluators, they were really good with Juliana, but I liked Peggy (for obvious reasons) and Sara the occupational therapist the best. After they all finished filling out their forms, our Service Coordinator arrived and that's when the discussion of the findings happened.
Each therapist spoke, told us the percent deficit that Juliana had, and what they recommended to get her on track. I have to say, I was overwhelmed. I knew Juliana was behind, but I didn't know she was behind in so many areas. Listening to each of them talk, I felt like I was drowning and I could feel myself fighting to control myself from crying. Each evaluator was quick to reassure us that she can overcome this and get caught up, but I felt overwhelmed, and still feel overwhelmed, and maybe a bit depressed.
At the conclusion of the meeting, it was determined that Juliana will receive speech therapy 2x's a week (feeding and speech- she's behind in some verbal things she should be doing), occupational therapy 1 x a week, and physical therapy 1 x a week. So if you count that up, that's therapy 4 days a week. How in the world are we going to get all that in while I'm still working?!? Unfortunately, I have to work, because my insurance is way better than Ryan's, and covers more for Juliana and all her doctors. This week we will get the call about scheduling all these therapies, and I will have to adjust our schedules accordingly.
I do feel like now I have done basically everything to get Juliana the help that she needs. I'm exhausted from the battle, but I need to gain strength for this next round. Don't get me wrong, I'm not trying to complain. I'm happy that we are able to help my little girl, I just am very overwhelmed.
Thursday, April 8, 2010
Friday, April 2, 2010
After I picked the kids up from Theresa's on Friday, Noah helped me to make his birthday cake. He added all the ingredients to the mixer except for cracking the egg. When the cake came out of the oven, Noah wanted to frost it immediately. I told him he had to wait for it to cool, so he kept checking it every 5 minutes to see if it had cooled off. I had Ryan decorate it after Noah went to bed, and then we hid the cake so that Noah would be surprised when he saw it.
On Saturday, we got a call from Dad that Mom was in the ER because she had a flare up of diverticulitis and that they would not be able to make it (we understood). Then, we got a call from our neighbors, Pam and Tim, that they would not be able to make it either, because Pam's father was very sick and they needed to go to him (we understood that too). So, Noah's birthday party consisted of us, Jaime, Bill, Rori, Liam, Brendan, and our friends Jeff and Jenny. Auntie Val and Uncle Randy flew down and came over for a little while. Noah had a good time with his cousins, and had a really good day!
As you are looking at the collage below, make sure you notice the pictures of Juliana "bullying" Brendan- hee hee.