Nov
26
    
Posted (Tina) in All Posts on November-26-2009

It was a great Thanksgiving. I went a bit crazy with pies – I actually made apple, chocolate pecan and 4 pumpkin pies with 2 different recipes (each yielded 2 pies). We had turkey, stuffing, mashed potatoes, yam casserole with pecans and marshmallows on top, and a special lime jello mold that is a family tradition.

The house was a bit crazy since Grandpa brought his 2 dachshunds. So we had 3 dogs running around the house and a cat trying to be on the DL, so she wouldn’t be bothered. Finally, the dogs settled in on the couch with Grandpa, so we asked him to stay put and let us stay in the kitchen.

Ella had reached 2 weeks of using her new medicine, Nasonex, prescribed by her ENT. Unfortunately, it caused a really bad cough that was continuing into the night time too. If you didn’t know better, she sounded real sick. So I called the doc and she told me to discontinue the Nasonex and see if the cough worsened. Time will tell.

I went ahead and decorated the Christmas tree since the holiday season seems so short this year. I want to enjoy it as much as possible. Lola posed for me in front of the tree…so nice of her.


It’s hard to think just 2 years ago on Thanksgiving, we were in the NICU and Ella had just come out of another surgery. She was intubated from surgery but was also still on CPAP. We had already been in the NICU for 4 months, but did not have any end in sight to her hospital stay. Sometimes it feels like another lifetime and most of the time, it seems like it was just yesterday.


Ella last year at Thanksgiving

Ella this year at Thanksgiving

We’re so thankful for all He has provided and how He has sustained us on this journey.



 
Nov
12
    
Posted (Tina) in All Posts on November-12-2009










Ella playing with George, the giraffe.

Josh taking more naps with Lola.

Lola LOVES the space heater. Can you tell?







Bun trying a new look, kind of spa-like.



What’s going on?




 
Nov
06
    
Posted (Tina) in All Posts on November-6-2009



Wow, I know it has felt like forever since I have posted. I’ve been meaning to, but then things have surfaced and made life crazy.

Since our last post, Ella has continued to do well. She is continuing to get stronger and trying to stand up in her Pack-n-Play. I have left the room and come back, only to discover Ella standing…and I did not place her in that position. Since our last post, it has only happened 4 times total, although she tries and tries every day. But this is a good sign: it means that she is getting stronger and will reach this milestone in due time.

Last week, Josh went out of town for an entire week. In anticipation of being home alone with Ella, I invited my Mom to come and visit during the same time frame. So, Grandma Eusey had a chance to see Ella. Although just as expected, Ella did not let Grandma Eusey get too close. She still has high stranger anxiety and only seems to do well with her parents.

Every so often, Ella is waking up at night. It only seems to take about 5-10 minutes of consoling and she will go back to sleep. We’re not sure what it might be, but don’t think it is anything too major since she is easily consolable.

We did not do anything major for Halloween. Yes, Ella did have a princess outfit that she wore…and can you believe it…I did not get a single picture. Grandma Eusey had to be taken to the airport and Josh had to be picked up from the airport, both on Halloween, so it was a bit hectic. I look forward to the day that Ella gets excited to dress up and trick-or-treat for candy. Right now, she is oblivious to Halloween – the outfit, candy, festivities. But I know that it won’t always be that way…someday we will have a chance to celebrate in true Halloween form.

Ella had another echo performed on Tues, Nov 2nd. Thankfully, everything checked out well. The flow in the SVC is great; the same flow as when the procedure was completed 6 weeks ago.

Besides the SVC, she has required more oxygen from 1 – 1.25 liters to remain stable. A hand full of months ago, she was 750ml during the day and 500ccs at night. In talking with the cardiologist, there is no physiological reason for the increased requirement to be related to the SVC. So, we’re not sure for the higher amount. Maybe it is just that she is getting bigger? In other words, she needs more oxygen for her growing body and her lungs have not kept up with the rate of growth that her body needs? It is just one theory. I just weighed her the other day and she is 29.3 pounds. The scale confirmed that it is not my imagination that she is getting bigger and heavier. And since she can’t walk, I have to hold her and carry her everywhere. She is getting very heavy for me!







We also went to have her ears checked today by an ENT (Ear, Nose, Throat Specialist). The great news: the tympanogram was normal. This means that she does not have fluid in her ears. However, the ENT also checked Ella’s nose and that is where the concern lies. Without getting too detailed, her nose is very dry and crusty way up there. The medicine that she started after the most recent SVC procedure, Plavix, has likely taken the dryness to a new level. The ENT thinks that her nose is partly occluded which could explain the increased need for oxygen. The doctor also described how this condition plus her being on oxygen therapy might explain the congestion she experiences every morning and the very thick secretions coming from her sinuses. It can’t drain via her nose in a normal way because it is too occluded, so it all goes down her throat. This might be why she has such a hard time with her secretions every morning. Also, Dr. Kelley stated that when you are heavily congested in the sinus area, it can impact the level of hearing. She prescribed some topical ointment for the nostril area as well as a nasal steroid mist. She wants us to try it for a handful of weeks. If this clears up the issue and we notice less oxygen requirements and better hearing responsiveness, then great. If not, she wants us to return for a follow-up visit in 5 weeks. It was great to get a clear answer as to why Ella might be experiencing these issues related to her hearing. Moreover, we’re thankful that we did not have to make an appointment right now for another procedure.









Finally, we decided to add a new member to our family. I have really missed having dogs (my Dad adopted ours before we left for Ella’s birth in Gainesville about 2.5 years ago). I miss having the companionship, especially when I am in the house all the time. At first, Josh was not elated about the idea of acquiring a dog right now since life seems unsettled and stressed. But after researching breeds and visiting a few, he softened and let me know that he would be content with getting a dog.

We adopted her from a breeder in Wyoming. She is a 17 week old, silver Weimaraner. Once Josh met her, the name just came to him. He asked, “What do you think about Lola?” So, that is her name! She is extremely docile and wants to be close all the time, following us all over the house. Her temperament and personality is a perfect fit for us. The breeder had already introduced crate and potty training, so a lot of the heavy lifting has already been done. Now, it will just be some basic obedience training, leash training, etc. Ella doesn’t seem too phased by the dog – she’ll just look at her every so often. Our cat is not too happy about the new family member and is still trying to adjust. Lola wants to sniff her and isn’t aggressive at all, but Macy is not having any of it! Now when Lola inadvertently gets nearby the cat, she runs! Macy has made it clear who is the alpha personality in this house! We’re hoping time and slow introductions will be the key.

Needless to say, we are happy about our new addition. As a matter of fact, I left with Ella to do an errand the other day. Josh was in his office working away. Lola likes to lay at your feet, so she was under the desk at his feet. When I came back, the house seemed strangely quiet. I went over to the office and found the two companions taking a snooze on the floor. This was especially funny since Josh was not sure that he wanted a dog. I think she has already figured out how to wrap him around her little paw.