Benign Sleep Myoclonus in infancy

This is what Jakob was diagnosed with. Its nice to have the information and a name with what he was doing and what was going on with him. The twitching that you see in the video is exactly what Jakob would do. Click on the link.

Overwhelmed, but this time with love and blessings!!

Sitting down at the computer for the first time today after a day of running from here and there, I started to edited, continuing on with the pile of work that is waiting on me. I have just returned from a friends home of which decided to help us out by showering us with some amazing gifts and providing some wonderful advise. I can't get in the mood to edit, I can even pull out work right now, but instead feel the need to share the wonderful amazing things that have happened to us in spite of the bad.

The devil wants us so easily to overlook the positive in our lives and let the negativity take hold. In knowing this, I have realized that I have given little to the positive in my blog.

Let me start with the present and work my way backwards. Friends... oh my Lord do we have some loving, trusting, compassionate friends around us and many of them. Never have I felt so much love from the day Jakob was born to present. In going through the drama and the pain that we have lately, those friends, true friends come out of the wood work and have been there for us in many ways. I have a very giving heart and to be in a situation where I feel limited because I am so caught up in all that is around us, makes it hard to receive. I wanna be in that place to do for those I love, but have had to learn to take gifts as well. Its humbling on one end, but on the other, as I sit here with tears running down my face because I am overwhelmed with the amazing blessings of friends, it heals my heart and lifts my spirits to know how lucky we are.

Secondly, the basic positive events that have given us time to breath in times when it doesn't seem possible. We were approved through healthwave.. thank GOD! Jakob is over a $100,000 baby so that was a answered prayer right there.

Also, the last check of Brians covered what we needed it to cover for the month,

and compared to last years August,which was my slowest month with no orders at all, I have received tons of orders this August which is great news considering how money is tight these days.

I met with the neurologist today and Jakob is doing great. I have a name for the seizures he was having and what those were all about and start lowering his dosage till he is completely off of phenobarbital.. yeah.

Brian is Coaching for Shawnee Mission North Freshman team. He is finally doing what he loves and he gets paid pretty well for it for the time he puts in.

Thirdly, family.. and do note that I am putting these things in order of not importance but in the order in which I can say the blessings have come from present to past, just to eliminate any sensitivity. Just as I am overwhelmed with friends I am with family as well. We have had to ask for some favors and some help and that isn't easy for us to do at all and you have pulled through for us even when it wasn't exactly the right time or perhaps you didn't have it to give at the time and yet you still helped.

We have so many people to hug, so many people to thank, so many thank you letters to send, something of which I am horrible about. Your concerns, your prayers, your help, your advise and your listening ears have meant everything to us.

What was our issues again?? I can't seem to remember?

Status Update on the DRAMA

Well the social worker stopped by today and met Josey and Jakob. She seen our cabinets were full and that Josey and Jakob didn't look starved one bit. There was only one call made into the SRS, but they had to come out because we had a child under one year of age. It didn't take her long at all to realize that there was no reason for any concern in our household. I encouraged her to meet with my son Jackson at the middle school. She said she had to anyways to make sure he didn't look like he was starving either. *rolling my eyes*

She asked if ever Jackson was left with the baby and Josey alone and of course, he's not, but we did tell her that he is aloud to take Josey to the Library or visit me at the studio. We assured her that everything is in a block radius but he's not aloud to go further then that with her.

She was perfectly fine with that and I'm sure once she met him she was reassured.

I am relieved that all went well although there was no reason why it shouldn't of. I am extremely annoyed that "the people" that called, who I think I can guess who it is, has it out for us so much or feels that strongly about what awful parents we are to do so.

Oh to small minded people who have nothing more to do then to nosey around in other peoples lives and try and find problems where there is none. Being open and honest and doing right by people doesn't always pay off in the long run. I refuse to be bitter, but finding a way to forgive the ignorant is very hard to do.

A sad day

First let me start off by saying that I never intended for my blog to be so blah and doom and gloom. But today is a very sad day for me. Writing is my outlet, its a healing mechanism for me. Getting my issues and problems out in the open is also a way to heal my soul so the blog is perfect.

Let me start by saying I have amazing kiddos. Those of you who know them would say the same. I am confident in that. My oldest, Jackson, who is 12 is awesome. We are truly blessed to have him. He is responsible, loving, compassionate, kind of an ol' soul. My 4 1/2 year, while very sassy but well tempered and funny. She's such a girly girl. No fit throwing and does what she told for the most part and adores her brother. Jakob, well we still have plenty of time to brag about him. So far, remarkable baby, of course.

I love my kids so much and have stayed at home with them all these years to make sure they are well taken care of. I am thankful to have a wonderful father and husband in Brian. We are open and honest with our kids and talk to them about everything. We also allow them their independence on many levels which is why I feel Jackson is the responsible young man that he is.

We live right in the middle of town. Main st. and my studio is a block up the road. The school is a block west and the Library a block east. Last year, I gave Jackson the responsibility of watching Josey for only a short time and only if our neighbors were home. Brian was working and I would be at the studio working. If I felt like they were gonna be left alone for too long a time I would get a babysitter. Jackson did very well. I wouldn't of done that if I didn't believe whole heartedly that he could handle it. There are some kids that I believe are mature enough at a certain age and others I wouldn't trust if my life depended on it. Jackson was definitely trust worthy. This year, he can walk with Josey up to the Library as well. Last year he was able to walk with her up to the studio if he needed to bring her up. No big deal.

Because we now have Jakob and Brian is home more often Jackson hasn't had to babysit for quite awhile. He takes Josey up to the library with him on occasion and that is it.

Josey... my little princess.. she eats a ton, but lately we have been having a battle of trying new things and eating what you are given at dinner. Some things she out right refuses to eat and others times if she doesn't like it we get the gag reflex... brother. Anyway, she is a skinny little thing and we always tell her she is gonna fly away if she doesn't eat. She does get plenty of food during the day. She is blessed with wonderful genes and ever since she was a baby, that girl has had very little fat. High metabolism..she's lucky.

Why am I going on about all this??? Today SRS called us. They are meeting with us tomorrow. Someone called and said that the twelve year old is left to watch the 4 year old too much and that Josey is too skinny.

I cannot tell you how heart wrenching it is for someone to accuse you of being a bad parent. I know I'm not, in fact, I know I'm a damn good parent. But not just accuse you of it, but feel so strongly about it that they wanna call SRS on you. I can't stop crying today. I am in aw. I don't understand. Of course, anyone who reads this will question us as well. I fully expect that. All I can say is to look and know our kids, To see their behavior and how they are with us and with others around them, you should know, or quickly realize they are well taken care of.

I can only take guesses as to who it is, but really how much does it matter at this point. Now we get to face the SRS and hopefully they will see for themselves.

I am not sure how much more drama and stress I can handle. Brian is still technically with out a job, although still doing part time insurance adjusting work. Money is tight, very tight and now this..not to mention family drama on my side.

On a good note.. Jackson started school today, 7th grade..wow. Josey and Jakob are doing great and business has been amazing this last month, thank GOD!

Celebrations and Struggles

I'm sitting outside the library in my car at 10:30 at night waiting on some photos to load onto my online site which has so far taken an hour. I can only check facebook, myspace and emails so many time before the boredom sets in. So I decided to blog.. its been awhile.

This has been a crazy few months with curses and blessings and a new realization of my faith. First, the curses. I'll make it short. Brian and I always said that if he was gonna go back to claims it would be if a hurricane hit Houston. Well hey, a hurricane did hit Houston! It's name was IKE. So we agreed to take the gamble. He quit his sales job which provided a steady income and went to work at Farmers. The last time he did this he was in for 11 months with Katrina and Rita. Little did we know that after 2 months they were letting all the IA's go. Thank God we didn't blow our money and we made it through four more months while Brian searched desperately for another job.

Four months later, still searching, he takes a job as a independent for a small insurance company handling local claims. His search never ended because while we are happy he has a job, he only gets paid when the insurance companies pay. Never consistent and sometime never enough for us to get by till he gets paid again. He's still searching to make up for the income in which we are lacking.

I have Jakob and that is a big blessing, but what is to follow was mixed with heartbreak and much stress. Two days after I get home from the hospital and Jakob is in Nicu, the heavy reality of our situation hits. We are barely able to cover our measly mortgage payment.. then the months that follow, its seems our hole just keeps getting deeper. While Brian is still searching for something else, my business is effected by the economy. Not only am I out of work in April cause of having the baby, which is my busiest month in spring, but I am increasing noticing that people are holding on to their money more. Instead of my average order of $150 to $200 It is now $35 here or $50 there and orders being placed months after the photo shoot. I'm still getting plenty of work and actually started booking two weeks after having Jakob, but I'm not seeing the money like 2008.

It is now July. My mother has had to step in and pay our mortgage this month. Our internet has been cut off because we couldn't pay our bill which is why I'm sitting at the library. We are leaning mostly on what money I earn in photography, with both of us desperately searching for more. Never in our almost 15 years of marraige has life been so tough.

New realizations of my Faith - Those of you that know me also know that I am not one to hold any of my feelings back and I am pretty much an open book. My hope is that what I have to say may shed insite or hope to anyone going through what we are. Three years ago, I had an amazing amount of faith in the Lord. I looked forward to church and working with our Alpha group. We were faithful tithers and even gave more generously in times when others needed help. God was priority in our lives. We put him first in everything we did. Brian got the job as an IA and worked in claims for 11months. We considered that a blessing never making that kind of money before. Life was great!

When claims were done we were able to look back and see all our credit cards paid and other things that hung over our head taken care of. It was like a big load was taken off our shoulders. Brian started looking for a job not knowing when he would be back in the office doing claims again. Three months past. It was getting late in the day and I had no money for food. Nothing. Out of desperation I pulled out a credit card that had been paid off and used it to buy food. I was angry. Why hadn't God provided. Why was it taking Brian so long to find a job. Why hadn' t there been any extra opportunities to make money that week. Why in the world would God allow this. He doesn't want us using credit cards. We have been tithing faithfully for years, isn't he suppose to provide?

A year later, we are in deeper debt with our credit cards then we have ever been. We owe the IRS a ton, and are barely making ends meet. I am still confused and my faith has faltered. We no longer are going to church.

To present, never before have I realized just how angry I was at God. Never before have I realized just how little faith I have. The hole keeps getting deeper and my faith is finally being tested to its limit, what little faith I have left. But at this point what do we have left but to have hope in the Lord. I have gone a couple years with out even praying, but lately I have prayed so much more.

One day as I was listing some things on Craigs list, I had a AH HA moment. I am a spoiled BRAT! Brian and I didn't do everything we could of done, we didn't cut down where we should of, we didn't sell things that we didn't need. There is a lesson to be learned. At the point that we are at in our lives now we have no choice to be creative. We don't have the credit cards or loans to take out. We have already exhausted all of our resources. My faith is now building. I feel like we are starting to climb out of this very deep whole.

Two weeks ago Brian got paid, we were hoping this next check was going to be bigger. His last one was a whole $115.00. He shows me this next check for $208.00. $208.00 !!!!!!! This is suppose to pay our mortgage and help provide food and gas for the next two weeks. Brian had been working his tail end off and that is what he got. That's the way the insurance claims business is, but we can't live like this. I lose it! I mean I feel like I have gone over the deep end. Just when my faith was building I feel like I have to start over again. I find my self yelling at GOD, laughing at the whole idea of faith. I'm laughing in my hysterics..laughing! Brian, being the good husband that he is, is trying so hard to help me make some kind of sense of this all, but having no luck.

The morning comes and its a new day. The next day comes and my anger towards God starts to dwindle and I'm picking my self up again. I humble myself to him and basically turn it over to him completely. I am exhausted. Hands in the air. I give up!

I'm sitting here blogging and I'm thinking about this week. God has provided. Although we don't have the money yet to pay mom back for our mortgage, he has provided us money for food so far. I have gotten orders, and more orders, and I am almost over booked this week with sittings. I spend last week and this week watching a friends kids which helped with more money. Apparently I had not surrendered all. There are lessons in everything and in these trying times its such a load off when you can turn all your stresses and sorrows over to the Lord and say "God, I am going to do everything in my power to get out of this, but I can't do this alone. I need you. I need your help. I surrender all!"

Three years ago, I never would of thought to turn my back on the Lord. Looking back at that defining moment when I had to use that credit card I realize I didn't wait long enough on the Lord. I didn't wait for him to act. He would have provided. We would of been forced like we are now to do everything we know to do. We didn't then. One Friday we had nothing! Nothing for food. Before the weekend was over we ended up with $250.. garage sales and selling what we didn't need.

I don't know yet if this hole we are in is gonna get any deeper, but we are doing all that we can to climb out of it. Brian is still searching. I am still searching but thank God, things are really started to pick up with business. My faith is building and I'm seeing God work in our lives everyday.

Blessings - First, I don't think I need to mention, but I will, our little almost 3 month old blessing at home. He is our little miracle baby. We are blessed with so many wonderful friends and family who prayed for us when we were in the hospital. Friends have also come along and helped and been there for us as we go through these tight times. We are so thankful for them. Family, has helped us a ton. We absolutely do not like to be on the receiving end of gifts, but have had to these last few months. Its very humbling, but we are extremely thankful. I am blessed to have the husband that I do. Financial strain can often be the ruin of marraiges, but for us it makes us stronger. Jackson and Josey are amazing and keep us smiling. Jackson has been keenly aware of all that is going on. I am so blessed to have a son with compassion and understanding. We may not have a lot of money right now, but we are rich in friends and family and for this I can give much thanks to GOD!

Jakob UPDATE!!!

He's doing GREAT!!!

http://www.mistydbartlett.zenfolio.com/
for more pictures of Jakob.
Album: Jakob Quinn

Jakob Update and New pics

Jakob has been doing really well. The last update we have is earlier this week we spent the night at Childrens Mercy so they could do another EEG and monitor his episodes if he had any. The EEG came back normal. He had his episodes on the way there in the car of course, but the first day we were there nothing. During the night I didn't get any sleep trying to catch a episode if he had one so I could call the nurses in and show them. Nothing.. atleast what I seen while tryin to stay awake. I think I finally dozed off around 4 in the morning. The next day the neurologist had said if he had any during the night they would do a 24 hour EEG on him, but since we hadn't had any episodes since we had been there he opted not to do it. There was a couple times the next day he had a little one. I called the nurse in and he stopped. We both stood there staring at him, waiting... and nothing. So she left. As soon as she walked out the door he had another one so I called her back in and guess what...nothing.. Very frustrating.

Here is the positive, we actually got to talk to a neurologist and even though we came away with barely any answers he are some things that came out of that conversation.

WE ARE VERY LUCKY!!! The neurologist was so incredibly perplexed by Jakob. First of all, what he told us was after reading Jakobs reports he is amazed he is even here. In all circumstances Jakob should of been a still birth. The Neurologist was amazed that I was in to have a standard scheduled c-section and for no other reason.. basically, I was in the right place at the right time. If I hadn't been there when I was Jakob wouldn't be here today. He also was very puzzled by Jakobs "seizure" activity. If it was seizures it shouldn't be happening everytime we have a car ride. Also, it's not like he is not breathing during these episodes. Instead he is thinking perhaps this can be a under developed nervous system. He can't say for sure but what he can tell us is Jakob is very healthy and the neurologist is very optimistic that he will grow out of these "episodes" as he grows.

It was all so interesting to see the neurologist in deep thought as he try to solve the mystery behind our little guy and to see how stumped he was that we had him with us today. While driving home, Jakob was awake in the car and had no episodes till he fell asleep. Leaving there, however, has left me less paranoid and very positive of his outcome even though we still don't have all the answers.

Saturday the 16th, we took a drive to Jakobs grandma and grandpa Bartletts. It was nice to get out of the house and not be so confined. He did have little twitches on the way there, but not much. He was visited by most of his aunts and uncles while there. *sigh* I feel like we can breath again, just a little.

Making our little house work

Well once again, we are going to furniture arranging fools. Our friends will be shaking their heads and laughing at us. It's to be expected.

While we have been in our house off of Green each of us has literally been in about every bedroom we have.

Originally, when we just had Jackson and had no intentions of having more, this house was the perfect size with one bedroom downstairs and two rooms upstairs. It is considered a two bedroom house cause you have to walk through one room to get to the other. Jackson was downstairs, Brian and I upstairs with an office. It was great, but along came Josey.

So Josey had the office room. However, Brian and I felt at some point that the kids should have the upstairs rooms and we should have the downstairs room so we traded rooms with Jackson. At some point, we decided Jackson would want more privacy without having Josey walking through his room all the time so we decided that we would move to the sunroom, Jackson would have Jo's room, and Josey would move downstairs. This would leave that middle room up there for a play area, hang out type room. . Well I was getting tired of the middle room being such a mess with toys. I never made it up stairs very often and it was just too much to keep track of. So how could I fix this problem? OH I know.. Lets let the kids both be upstairs again, Brian and I will move back to the downstairs room. All the toys will go in the Sunroom and that can be a play room more or less. That done, but oh crap we are pregnant again!!!!

Up until recently we were just going to keep a pack and play in our room for baby Jakob, not knowing what the heck we were gonna do. We love living where we live. We have the best neighbors and friends, we love being a block away from the elementary school. Our mortgage payment is awesome. We just weren't ready to find something new. So what to do... ????

Okay, here we go again. *breath* Jackson is going in the sunroom, which he is ecstatic about! Should I be putting an alarm on the door incase he has the urge to sneak out.. that may happen soon. Baby Jakob will be taking Jacksons old room. We are staying put and Josey is staying put. We don't know where the toys are going just yet! Oh and I got fixed so there will be no need to make room for any other kids.

Baby Jakob Quinn

What fun drama in our lives, but God is good and with many prayers from our family and friends and people we don't even know Jakob has been making a remarkable recovery.

On Wednesday April 22nd, we checked in to Ku Medical Center to have Jakob delivered via c-section. Before and during Delivery the umbilical cord was wrapped around baby Jakob's body putting stress on the body. They took him to NICU which we discovered he had Pulmonary Hypertension. At that time it was critical. There is nothing more heart wrenching then to hear that there is something wrong with one of your children and they have no answers of what the outcome may be at that time. All you have left is to pray. Because the umbilical cord was wrapped around his body and it caused stress during birth Jakob wasn't getting enough blood supply and oxygen. This could cause many of his organs to shut down..liver, lungs, kidneys, could effect the heart and brain. Immediately we asked for prayer support and what an amazing response we got. Friends from a long time ago came out of the wood work, New friends, tons of family, people from churches we didn't even know started praying for our little Jakob! It was so encouraging and uplifting!

In NICU they had Jakob on a ventilator. The first day Jakob had to use 100% of the oxygen from the ventilator and couldn't breath on his own. Day two, they moved him down to 65%. During these two days I was recovering from my c-section and could not see him which was very hard. It wasn't till Thursday evening that I finally got to get up and go see him. He was beautiful! I knew what to expect with all the tubes and tried to be strong, but it wasn't till I got back in my room that I completely lost it. He was on so many medications and tubes, but I knew that the doctors and nurses at Ku Med would doing their best. Day three, Friday, Jakob went from 55% to 65% oxygen dependent down to 34%. During this time we found out that the only organs effected were the lungs and heart. Heart very minimally and that had completely healed. God is good! And his lungs, of course, because he wasn't breathing on his own. But he was making a remarkable recovery becoming less dependent on the meds. and ventilator. We were for warned that sometimes there is a honeymoon period where everything seems to be going great and then something happens, basically letting us know that we weren't out of the woods yet. So still we continued to pray.

Day Four, Saturday, Jakob was down to 25% oxygen. The doctors and nurses were telling us that he should soon be off all meds. and the ventilator all together. Wow, so soon! Amazing! We had thought we were going to be in here for two weeks, but the progress he was making was unbelievable. Thank God! They had previously put him on a medication that basically paralyzed him so he wouldn't pull any of his tubes out. They had already started weaning him off of that med, but it was this morning that when I held his hand he squeezed my finger. What a wonderfully experience to have first thing Saturday morning! I had checked out of the hospital this day. I really hadn't thought it was that bad until I got home later that evening and was missing him tremendously! But sure enough we got up first things Sunday morning and headed to see him.

Day Five, Sunday, Jackson had decided that he wanted to visit Jakob this day. Jackson and Josey were not able to see him previously because they had to be twelve and older. Well Jackson is almost twelve and the doctor agreed to let him in since he was so close. We had for warned him that when we went in he could probably still have all his tubes in. Sure enough he did. Jackson handled it well at first but then started to get nauseous. It ended up being too much to see his little brother that day and understandably so. Brian and I decided to come back later and sure enough his tubes were out, off all his medications and we seen his eyes opened for the first time. Not only that but we got to hold him which was an unexpected surprise! Day Six, Monday, Brian worked so mom and I went up to visit Jakob. Mom hasn't seen him for a few days and was so excited to see him not hooked up to all the tubes. They were transitioning him to eating breast milk. He had not been feeding previously to this day. This was another important transitioning phase for him. To see how well his stomach reacts to food. Amazingly enough, Jakob took to his feedings well! I got to hold and feed him and it was wonderful! He chowed down on his food. I was informed by the doctor that they wanted to run a EEG on his brain and then on Wednesday do a MRI just to make sure that all is okay with his brain before they release him. I was also informed that there is a mild, moderate and severe form of what happened to Jakob and thank God Jakob's case was very very mild, but that we would need to check in with NICU for the next two years to make sure that there is no long term neurological effects. With Jakob's being on the mild end the doctor believed the likely hood of that to be non existent but we still had to take the precautions and monitor him. Let me just say how incredibly grateful I am that we did not end up on the moderate to severe end which could of easily happened. Severe would of been that he would of needed the ventilator for the rest of his life, moderate would of been life long neurological effects and more then two organs effected. AGAIN, GOD IS GOOD!!!!

Day 7, Tuesday, Brian and I were surprised to see Jakob out of his room. The oxygen tube in his nose was taken out. They had already done the EEG but hadn't received the results from that yet. We learned that Grandma and Grandpa went to visit him and got to feed him.

Brian changed his diapers while I took his temp and fed him later again. We didn't bring our camera which I wished we had cause he was so alert, eyes wide open. Just adorable. While I was holding him however, he started to twitch. We couldn't tell if this was muscle spasm or seizures. Because he was coming off his all the meds. it could very well be that his body was just trying to readjust. We pray that was the case. They were going to monitor him the rest of the night to be sure it wasn't seizures. Praying and crossing my fingers.

Day 8, Wednesday, we will be visiting him today and we'll get the results of the EEG. Find out more about the twitches and baby Jakob will be getting his MRI. Jackson also wants to try and revisit him so we will see how that goes.

LATEST UPDATE: I just called to check the time on the MRI before we came up and found out that they post poned it for a couple days. The twitching ended up being seizures so they are giving him more doses of phenobarbital. The EEG confirmed activity in the brain that he was having seizures. So please continue to pray.

Here is some information on seizures in babies. http://oce.sph.unc.edu/phnceac/babyguide/seizure.pdf

Day 8, Wednesday, after receiving all the above information we headed to the hospital. Being on phenobarbital Jakob was really tired so he wasn't able to be bottle fed but instead fed him through tubes. He also slept the entire time we were there. He had the oxygen tube back in his nose. It was a little hard to see at first, because you feel like a step back instead of forward. Once he is stabilized on phenobarbital and given the right dosage they will then schedule the MRI again. A neurologist will be coming to see him tomorrow. More than likely we will be continuing him on Phenobarbital while he is at home until he outgrows the seizures. OH fun! The seizures were a result of the lack of oxygen and blood supply to the brain.

Day 9, Thursday, Our cute little guy was still very sleepy while we were there tonight and slept the whole time, but we got to enjoy some cute little faces that he made while he slept and snuggled with him the entire time we were there. He got to have his MRI tonight. We haven't gotten the results back from that yet, but should hear about it tomorrow. They have him now on a normal maintaining dose of phenobarbital and he has not had any seizures since around midnight. He is back on the bottle and looking much better then yesterday.

After reading a couple of emails that we received about seizures and others that have gone through this it comforted us quite a bit. What a scary thing to hear at first, but Jakob is going to be fine! We'll make sure to take some more photos tomorrow!

Day 10, Friday, Jakob is doing so well. Grammy went to see him and got to hold him for the first time today. His MRI came out normal. He was having a little problem with his feedings.

OH not that he was having a problem eating..he chows, but when he was done his chest would rattle and he would cough which could be an indication that milk was getting into his lungs. Not a good thing, but feeding specialist, didn't know they had those, will be monitoring him all weekend and they may need to do a feeding test on him Monday that will track whether food is getting in his lungs or not. He didn't have this problem before he went on the anti seizure medicine so we are hoping it is just an effect of that. We will see.

Day 11 and 12, Saturday and Sunday: Jackson went up with us both days. He got to hold Jakob for the first time. Seeing him without all the tubes and as a normal, healthy baby was a much better visit then the first time. He, of course, thought his little brother was adorable.

Jakob is doing so well. His last few feeding have gone wonderfully. We are thinking he was just downing his bottle a bit too fast, but the feeding team will still evaluate him to see if he needs the further testing. All the nurses are pretty hopeful that he will be coming home within the next couple of days. Monday, a neurologist will be coming in to check on him and consult the doctor about him and he still needs his circumcision. After that he should be free to go. Yay!!!

Day 13, Monday: We finally made it up to see Jakob but it wasn't until late. Brian had a full day and didn't get home till 7:30pm. So we didn't actually get the hospital till about 8:30 at night. Waiting that long killed me. I was in tears when Brian got home and I watched the speedometer all the way there making sure he went as fast as he could possibly go. I missed him so much. I cannot wait till Jakob comes home so I can be with him all the time. At this point I am thinking it may be Wednesday. Today they did his circumcision but the neurologist still hadn't shown up. That is all we are basically waiting on.

Jakob looked so good, of course. I got there at the end of his feeding. I did forget to ask about whether the feeding team felt he needing testing. Will remember to ask that tomorrow. I swear he is the goofiest kiddo. He makes the funniest smiling faces. I wished I had taken my camera tonight, I didn't. How many photos can I take of him before he gets home anyway, his faces are just so darn cute!

Day 14, Tues: Brian and I went up earlier today and I think we made it at just the right time. It was Jakobs time to eat and a lady from the feeding team was there. So Brian fed him and she observed. She believes all is okay and informed us on what to watch out for or be concerned about. That was nice, but she didn't think he needed further testing..Yay! Still waiting on that darn neurologist. Cross our fingers he will be up there this evening and we can bring him home tomorrow!!!!

After he ate, OMG! His eyes were wide open for a very long time. That was awesome. He just looked around at everything. I got to change two poopy diapers..oh yay! His stomach is sure working, there is no question about that. While we were there he was having a hearing test. He passed. They also said before he leaves they want to do a car seat test on him to make sure all vitals stay normal for the drive home. Isn't it crazy all the precautions they take? I have no complaints. What is gonna be hard is not having the monitor hooked up to him where we can view his heart rate and so on. I hope I'm not too paranoid when he gets home.

Day 15, Wednesday: We got the okay to bring Jakob home! Yay!! By the time we got up there it was about 3:30pm. We got his prescription, they had to do a car seat test for an hour to check his vitals, got an over view of all the precautions and how to's and we were out the door by 6:30pm. On the way home I was sitting in the back with him and he started having seizures again. He would have one, then 30 sec. to a minute would go by and he would have another one. GREAT! *sigh* Once we got home and got him out of his car seat he stopped having them. We assume that it could be from the car ride home, the bumps and turns, so forth, what he wasn't use to. The doctor recommended that if he had more to call them back and let them know and if he had one more then 5 min. long we would have to bring him back in. I don't expect that I am going to be getting much sleep for the next few days and probably a tad bit anxious. When we got him home and laid him on our bed he was taking deep breaths.. I got paranoid about that. Brian informed me that he is so use to laying on firm surfaces and that our bed is probably a little to cushiony for him and that is probably why he breathing the way he is. He was fine, once we laid him in his bed.

So this is his first days home. I don't think I will be driving him around alot and we will probably be at home, hanging out for few days till we get settled in. I haven't taken any more pics yet, cause I'm suffering from lack of sleep.

Day 16 and 17, Home at Last! Well Thursday was spent trying to wake up from lack of sleep and getting adjusted. He hadn't had anymore seizures that we had noticed. His Papa got to see him for the first time and we had a couple of other visitors, our friend and husbands boss, Lindsey and my aunt Jean. Of course, his Grammy came to check on him a few times. Friday my aunt Bonnie and Grandma Barnes was over to say hi and good friend and neighbor Rachel got some snuggle time as well. However, when Rachel was holding him he had another little seizure and once she left a couple more back to back. We were told to call in to the NICU if he had more so we did. I spoke with one of the doctors there that informed me that since Ku Med only sees their neurologist once a week that we should take him to the Pediatric Er at Childrens Mercy, Especially since he had three or more in an hour.

Okay, Panic set in and off we were again to the hospital. Once again, his car ride wasn't pleasant at all. He had several seizures in a row while we were driving as was the case on the way home from discharged. Once we got checked in at the ER we literally waited for four long hours before we seen anyone. They took a Phenobarbital blood level check and it came back therapeutic, which basically says it's where it should be. We never actually spoke with a neurologist once again, but were told that we are to call Childrens Mercy on Monday and set up Jakobs next apt. to have another EEG ran on him. We will start going to Childrens now instead of Ku, because they have more Neurologist on staff and on hand to handle his situations. They were going to prescribe another anti-epileptic med which was suppository that would of been taken when he had several seizures in a row, but later opted not to because it could cause problems breathing and because of his age, so we have what we started with when we went in there. Really leaving not having any more answers then what we started with. We got home at 3:30am in the morning. What a way to spend a beautiful Friday evening. Again, several seizures in a row on the drive home.

Well, We will get a call in on Monday for his follow up apt. Again, we won't be driving him anywhere since the car ride obviously triggers more seizures and there is nothing more we can do about it right now and we will continue to monitor his seizure activity at home.

It's been too long!

Being uninspired is really no fun! I log onto my blog account thinking I should write something, "what we are doing, what's new! Anything!" But when your nose is so far into work nothing comes to mind. That is where I have been the last few months. From October to literally the beginning of the year I have been working my booty off. Everyday sittings and everyday editing. I welcomed all the business, it was great even though a break now and then would have been nice.

January is now here and perhaps the slowest month for me. I have been waiting for it, however. This is the time of year that if money wasn't in question I would take the whole month off and vacation, but that isn't the case this year. Our lives is like a roller coaster..big ups and downs. Brian has been without a job since November 15th. That was a down that came unexpectedly. Thank goodness that is the time of year I rock and bring in a ton so I was able to make up for any loss. Today he started a new job working for my friend Lindsey who owns her own insurance company so he is doing field work for her. Although the beginning pay is not near what we are use to it's only training period and we hope that the increase in pay will be significant in the next few weeks. It's a job and one we are very grateful for. Miraculously we were able to get through this month, but we couldn't of made it financially in February.

My pregnancy update.. well there will be more to come on Jan. 28th when I have my sonogram. This has been the oddest pregnancy for me. When we finally received our Cobra information Brian had just lost his job so we couldn't obviously afford the $1000 payment for insurance each month. At that point I had made it to the doctors once and that was for my blood testing and so on. Then I got busy with work. We hadn't planned this pregnancy so it was a surprise to begin with. So as I worked hard those first few months there were times I literally forgot I was pregnant and would schedule weddings or sittings in May which is when I thought I was due. Only to have to call back my customers to cancel. As months passed I neglected to make it to the doctors and not having a clue as to where I was going to go at this point not having insurance. Finally, the beginning of January I made an apt. at the Health Dept. at this time thinking I was 21 or so weeks along. I have never waited so long to go the the doctors. The Health Dept. was wonderful and very helpful! They measured me that day at 26 weeks instead of the 21 I thought I was. That was welcoming news considering that I definitely felt like I was farther along. When you go through the Health Dept. they send you to KU Med to have the baby. The cost is incredibly affordable whether you have a natural birth or a c-section. We scheduled the sonogram which I am anxiously awaiting to find out for sure just how far along I am and what we are having.

Other fantastic baby news... I have two sister in laws on the Bartlett side due in August as well!! That will be three new grandbabies for my mother and father in law for 2009!!!

Well since I am not on any lavish vacation this month but have tons more time on my hands I have been nesting! Having Brian home has been very helpful. I actually miss him today as he is out working. Josey and him have definitely bonded and she is not attached to her mommy as much. We both have been working fervently around the house trying to reorganize and do things to our home we hadn't had time for in the past. From pig sty to clean, organized, everything in its place has been awesome! We love having a small mortgage and although we have another one on the way we are determined to make this house work at least for another year or two. All of us has been in each room one time or another. Brian and I had our room in the sun room only now to be in Josey old room and we have moved JO's room upstairs next to Jackson room. It's crazy! Brian has just finished painting Jo's room.. I think he did a great job!We have been cleaning out our full garage, how we became pack rats over these last few years being in this house I don't know, but we got rid of tons of junk. Now we have boxes and boxes of stuff to fill it back up with for a garage sale. Next on the list.. repainting the dining room, kitchen, of which has never been painted, and the downstairs bathroom.

So this has been us the last few months. An update is soon to come on the 28th when we get more news!!!! I can't wait!