Julian Family

~ I have prayed for this child and the Lord has granted me what I asked of Him ~ I Samuel 1:27 ~ For I know the plans I have for you declares the Lord, Plans to prosper you and not to harm you, Plans to give you hope and a future ~ Jeremiah 29:11 Lilypie2nd Birthday Ticker

Thursday, December 28, 2006

Max laughing





This isn't the greatest video ever, but it shows a little bit of him laughing. He was really laughing big and by the time we thought to get the camera he was near stopping.

Wednesday, December 27, 2006

4 Months



I love my daddy!



We will do anything to get a laugh!



I laid Max down for a nap and thought I'd lay down for just a minute. I ended up napping with him for about an hour.



I love bath time!

Max turned 4 months on Friday, Dec. 22. I feel like I say this every month, but I really can't believe how fast the time is going. It was a year ago last night that John and I found out we were pregnant with Max and I can't believe all that has happened in just one year. We had his 4 month check up on Friday and it went really well. Dr. Westbrook seemed very pleased with how he was doing. She did several things that she does with all babies his age and I got the feeling that she thinks he did as good or better than most 4 mon. babies. One thing she said he did really well was hold himself up while laying on his tummy. We sure have worked hard enough on that! She also said that she knows that the therapist we are seeing are trained to see deficits, so she knows that Max must have some to even qualify for therapy, but that the deficits he does have seem to be fairly minor at this time. She was unable to tell a difference between the right and left side. The results from the EEG and the most recent monitor download were not back yet so she or a nurse will call with those when they get them. We are continuing the phenobarbitol and monitor for the time being.

After we left the dr. we went to the hospital to see one of our favorite nurses from the NICU - Margaret. It was so great to see her. She was amazing during our time there. She took such good, good care of Max and of me and John. We always felt like she (along with 2 other fabulous nurses) treated Max as if he was her only patient and like she would have treated him if he was her own. From there we went downstairs to get some coffee and lunch. Almost every day John and I ate lunch and dinner at the hospital and I usually got coffee from the Starbucks downstairs. On Friday I got my typical sandwich and I tried a type of fancy coffee drink that my dad had bought for me once while we were there. The coffee I probably would have gotten anyway, but I just wanted to taste the same food I had eaten for weeks and be able to enjoy it knowing that I now have a healthy baby. It was good and the coffee was better than I had remembered it. When I got my coffee Max and I took a walk in the front garden area of the hospital, the same I walk I took almost daily. I thought I'd write a few verses that are on the garden walkway. They continue to hold very special meaning to me now. There were others, but I can't find the paper I wrote them down on.

Proverbs 3:5 - Trust in the Lord with all your heart and lean not on your own understanding

Psalms 55:22 - Cast your cares on the Lord and He will sustain you; He will never let you fall.

Margaret thought Max looked really great. She commented several times that he is just perfect. We think so!

He is having a very fun week here in TN. We're making lots of good memories and trying to spend as much time with loved ones as we can since it will probably be awhile before we are back in this area again.
We do really miss John and are looking forward to seeing him in a few days. We missed his birthday yesterday so we will celebrate when we get back and enjoy having some good, much-needed family time just the 3 of us.

We hope all of you had a very Merry Christmas!!

Friday, December 22, 2006

Tennessee, here we come!!!

We are about 8 hours away from being in the good 'ol Volunteer state and I can't remember when I've been so excited about going there! Max hasn't seen his gran gran and papao for a month and I can't wait for him to get there and play, play, play and soak up all of their good lovin. He'll also get to see his cousins and aunts and uncle, so it will be a great time! If only he knew how much fun he was about to have... I also can't wait to see my mom's Christmas tree and eat her good cookin.

Today was a great day and I really wish I had time to blog about it. I will write in more detail later. We had his 4 month check up today and besides me confusing my appt time, it went really well. I thought it was at 10:30 and it was actually at 9:40, but they were nice enough to squeeze us in. After that we went to the hospital to see one of our very favorite nurses from the NICU. This visit is what I really want to write about and maybe will be able to do that tonight or tomorrow. For now, I've got to hurry and finish packing/cleaning so we can hit the road.

Thursday, December 14, 2006

EEG

Scroll down for the update on the EEG. I'm not sure why that post showed up below the one that Karie did this morning.

EEG Prayer Request

Just a quick request...Max is having his EEG this morning. While we won't know the results for at least several weeks, we ask you to start praying. First of all ~ Max has to be asleep for them to get an accurate reading. Please pray that he will cooperate and that they will get what they need today. Secondly ~ please pray that through the EEG they will find that Max is not having any seizures. Please pray that when Max's left side lays limp it is simply because he is tired or not feeling his best. Please pray that they will find only normal brain activity.

We again thank you so much for continually bringing Max before our Heavenly Father,

We keep praying,
Karie

Our Little Hunter





These are some pictures that were taken over Thanksgiving. We think he'll be a hunter just like his daddy, papao, papa, and Uncle Kelly.

Today the EEG procedure went well. She said we may actually know results earlier than what the pediatrician thought. I hope so. The EEG will show if he has the potential for seizures, not if he has actually had any or not. She said there is a lot that can be seen by the patterns that will show up from the test. I so hope everything looks normal.

We had an exciting "first" tonight. He laughed out loud! It is one of the sweetest sounds I've ever heard and we were able to get it on video. It was a good, good ending to a tiring day.

We start our Christmas celebrations tomorrow. We'll be with the Julian family this weekend and then off to my family's the next weekend. We may be a bit out of touch between now and then with the busyness of the holidays, but I'll try and post at some point.

Sunday, December 10, 2006

Psalms 121:1 says, "I lift up my eyes to the hills. Where does my help come from? My help comes from the Lord, Maker of heaven and earth."

As I'm sure you can tell, my heart is touched by babies who are sick and their families. I think I will always feel a bond to the parents, even when I don't know them, because to some degree I feel that I can relate to what they are feeling and what they are going through. Today I found out about another very sick baby that needs prayers. I feel that it is a important that I spread the word when I hear of someone who needs prayers because so many of you prayed on behalf of Max and our family and we saw what the prayers of many righteous people can do. A 6 month old baby girl named Harper Hawley (Steve Hawley's great-niece) is in the hospital in OKC. She is hooked up to a ventilator and is having constant seizures. I don't know any details more than that at this time. The parents names are Zac and Hayley and they are very scared. So now I am asking all of you wonderful prayer warriors to add her to your prayer list and ask the One who is able to do immeasurably more than all we ask or imagine to take care of and heal this precious baby and to be with her parents giving them the peace and comfort that only He can give.

Friday, December 08, 2006

Baby Parker

I just checked the websites of the other children on the right of my blog to see if there were any updates. My heart is very heavy as I write this. Baby Parker's family just found out that he has a very rare genetic syndrome that is fatal. I absolutely cannot imagine getting this news. Please pray for this family.



Well, Wednesday night was an exciting night for me. Max slept through the night!!! At least, what I consider sleeping through the night. He slept from 10:30-5:45. I woke up at 5:15 and realized I hadn't heard him at all, so I ran in his room to be sure he was breathing, even though his monitor would go off if he wasn't (I don't fully trust it) and he was, so I very happily went back to sleep. I fed him at 5:45 and was back in bed at 6. He slept from 6:00 until 9:00! It was very exciting and I was sure that this was the beginning of some really good nights of sleep. Max had other plans. Last night he thought it would be fun to hang out with mommy at 12:30, 2:30 and again at 3:30. At 3:30 we had a heart-to-heart talk and I asked him to please sleep a little longer and he, being the very good boy he is, slept until 8:30. I guess if I have to be up in the middle of the night there is no one better to be up with!
We start physical and occupational therapy next week. We had talked about our options and were leaning towards using Easter Seals anyway, but the decision was made very easy for us when they called to let us know that Cabot doesn't have any openings for therapy and won't for awhile. We will meet with them next week and they'll give us a home program to follow until Christmas, then, as soon as the holidays are over, we'll head to Easter Seals every other week for therapy. They'll give us a home program for the in between weeks. I'm looking forward to getting started with this. I look at is as a way to see Max make great progress and I am confident that he will. I am also really glad that we will have an expert pointing the progress out as well as telling us about any delays that he may (or may not) have.

I talked to his pediatrician about how the left side sometimes lays limp. She agreed with Easter Seals, it could be seizures. She also said that it is just as possible that it's not. She will be setting up an EEG to be sure. I don't really think it is seizures, but I'll be glad to rule that out.

One last medical thing. Yesterday his monitor was downloaded to see if there has been any true heart or respiration episodes and the lady told me a little about the report from last month. Max has actually had a few apnea (stopped breathing) episodes, however, they weren't bad enough or long enough to make the machine go off. He has to actually stop breathing for 20 sec. to make the monitor alarm. She said from what she remembered it wasn't a neuro problem, so I think there are a few possibilites as to what these episodes are caused from. 1, he has a really bad cold, so it may be that he has just had a few breathing difficulties with that. or 2, she was very scatter brained yesterday and she may have been thinking of a different child. She said she would call me when she is back in the office, which could be a few days from now, to let me know more about what the report said. Hopefully we'll know more when we see his pediatrician again. I'm not really worried about this.

Now, for a few more things that will probably bore anyone who is not a grandparent or aunt. :)

Max is getting cuter by the day!!! Of course we think every little thing he does is so, so precious and cute. I think he may be getting close to laughing out loud. I don't know when that really happens, but he looks like it could be soon. He is actually enjoying bath time these days. It used to be a time of day that I dreaded, but I think he thinks it might be kind of fun. He likes to kick and watch the water spash. He also kind of plays with his bath toys. They usually wind up in his mouth. Which leads me to his fists. He LOVES to chew on his fists and sometimes manages to get a thumb in his mouth. I don't know how I feel about this - I really don't want him to be a thumb-sucker. It's cute now but probably wouldn't be when he's 4 or 5 and can't break the habit. I'd like to stick with the paci so I can choose when to let go of that. He is reaching out for toys and I think it's more than just his arms waving around and he happens to hit the toys in the process. I think he is deliberately reaching for them and making contact. He seems to have discovered that he has hands and they can do something. One of my favorite things to do is stand over his bed and watch him sleep before I go to bed. The sounds he makes are so sweet. I love to watch him and think about how perfect and innocent he is and how he doesn't know about anything worldly. This is something I LOVE about children and I wish I could make it last forever. He really melts my heart. It's an inexplainable feeling. God has blessed my life so richly with such a wonderful husband and child.

Sorry if I bored you! You can't say I didn't warn you!!! Have a great weekend!

Friday, December 01, 2006

Ho! Ho! Ho!


Max was not very impressed with Santa! Santa, me, and Nanny Di did what we could to get Max to smile or even just look at the camera, but he had a full belly and had missed his nap earlier, so he really just wanted to sleep. I figure this is better than next years will be, when he will probably cry when I put him in Santa's lap. We decided to forgo the cute hat that goes with his outfit since daddy thinks it looks a bit goofy. Even though I, along with many others, think it's cute, I'd hate for Max to look back in 20 years and ask why I made him wear a goofy hat, which I'm sure he will do anyway at some point along the way!