Jake update, FIVE Months Now!!

I haven't written a blog in awhile. Its hard entertaining a FIVE month old! He only likes to sleep 20-30 minute naps. I can't believe five months ago we were an emotional roller coaster. On a daily basis we are trying to remember his enzymes, percussions, eating ourselves, feeding the dog and going to work full time. Jake is now starting to eat baby food. Granted, he was eating apple sauce at one week of his life. Now, he is trying more different flavors.  He loves apples, pears, sweet potatoes. 

(this picture is him at birth, lower left one month, top right two months and then at three months)

 Here is the little man, first time with sweet potatoes. This week I tried green beans. He HATES green beans. I put them in and they come right back out with a disgust look on his face.

 Jake went to see Dr. Wolf on Tuesday. He is his pulmonary doctor at Dayton Children's. He says he looks AWESOME! Lungs sound good, gaining weight and all. BUT, his nutritionist says he isn't gaining weight well. At his four month check up, he weighed 15.7, now he is only 16, 25 inches in length.  She has upped his enzyme intake to five capsules. He was only taking four. We have to open the capsules and put the small beads in apple sauce. I will have to take a picture of it next time I feed. They are tiny, white "rock" like beads (their hard) and he takes like a champ. When he gets teeth, she said the toddlers try to chew them. I can't wait till he can just swallow the capsules.

We now have to add melted butter and salt to his baby food. Or oils. Add more calories and fat in his meals. I wish I could suck some of the fat off me to give to him. I gain it so well :)

They checked his belly button hernia and he said they may have to surgical fix it. Feels like its not healing. Possibly when he turns one or sooner.

 Five month old picture. He is discovering more toys and now his feet. Loves pulling his socks off. He isn't rolling over yet. I hope in the next few weeks he will. He sleeps at night. Goes to bed around 7:30-8PM takes down 7-8 ounces with rice cereal. He will then sleep till 5 or 6 AM.

Here is Jake on our walk a few weeks ago. He loves being held, LOVES this carrier. He watched me wash the dishes the other day in this carrier. He has a fascination with trees. He stared at them the whole walk. Tony pulled down the limb and yanked off a leaf.

Jake is usually a happy baby (until he fights his naps, he has lungs and gets loud) He loves to suck his fingers, he can get his finger in while he is sucking on his bottle nipple,  laughs when you tickle him. Ticklish around his neck and feet.

Next Friday, is our charity CF run/walk. Its called Run Like Hell in cincinnati. A 5K around a cemetery. My family is walking it with Jake in tow. Ill get a lot of pictures and post later.

Well Jake has been sleeping for a half an hour. It is time for me to turn in!

Jamberry Nails

I recently joined the Jamberry Family. I heard about this new consultant thing from a friend off Facebook. I looked into it and talked to Tony and mom about joining. This is a newer company with not a lot of consultants, so there is room to grow.

They are nail wraps which are applied with heat. They stay on your nails for two weeks and toes for six. They give you style for any mood or just for fun. They have adult sizes and juniors for younger children. They are non-toxic and the adhesive are not bad for your nails. To remove, just apply heat, soak in oil or coconut oil and gently peel off.

Each sheet come with two manicures and one pedicure. $15 a sheet. Buy three get one free. I had a launch party to show and tell this new company. As a hostess I received free sheets and half off items. Totally worth it! If anyone would like to have free item please get with me to host an event. www.angiethornton.jamberrynails.net.

Like getting your girlfriends together for fun and wine? Have a Jamberry party! Are you hosting a child's sleepover or birthday party? Have a Jamberry party. Hey what is there to loose? You get FREE wraps!

I joined the Jam family to help raise money and pay for Jacob's hospital bills. This will be a little side job. If anyone would like to join the Jam family let me know! If you need extra cash to help pay for bill, or if you like to party at other people's houses.  I will answer any questions you may have. The more consultants you have under you, the more money you make off parties!

July in a Nut Shell

It's been awhile i know. We have had a busy summer. Work, Feeds, percussions, diaper changes and smiles. I feel so bad that we leave Gracie out sometimes. She loves her brother so much. Always looking for him and concerned when he cries. She stopped eating his diapers. I think she learned her lesson.  Here is Jake getting his percussions last night.They are easy to do when he is in his chair or swing. Dayton Children's got us the very heavy, long vibrating machine with the cup on the end. It is used over his lungs to break up any mucus. He likes for us to do this on him. All smiles when I talk to him. 

This past Sunday, The Fraze had Kenny Loggins play, for a charity event, for Cystic Fibrosis. The Fraze does this every year. So if you couldn't come this year there is alway next year. The event coordinator spoke about Jake. He also spoke about a girl who had a lung transplant and a 60 year old who also has CF.  I wish they went into detail on his condition. They may have gotten more money. Maybe even showed a picture. Mom got us tickets. Julie, Scott, Cameron, Rado's and mom's friend Debbie and her husband also came. Thanks for coming to support the cause.

Here is Tony and I wearing out DCH tshirts. You can buy these in their gift shop. All proceeds go to DC.  Only $12 not much. And you can order any color. 

 Last Saturday, we went and met my cousin in Richmond, IN Cracker Barrel. She let us borrow her son's rock 'n Play. Let me tell you that was a God sent! Her son Lincoln slept it in until now. He is five months old.  Jake got to meet his second cousin Lincoln.  Probably didn't know who he was. I can't wait till they get older so they can play together and not look at each other in their car seats. Tony, mom and Cathrine's mom, Fran came also.

 Here i am with Lincoln. He is five months here. 16 pounds. A lot heavier than Jake.

 Here is Cathrine with Jake. Yes, Cameron, she has a Butler T-shirt on! He was OK. Not wanting his photo taken tho.  He was hungry.

 Here he is in the Rock 'N Play. Not sure what its all about, but he did sleep for 8 hours the first night and the rest of the week he has slept through the night. 8PM is when he likes to go to bed and then wake up around 5AM to eat. He then usually goes back to bed after his bottle for another hour.

 This was taken over at the Langer's house. Julie was holding him talking to him. No laugh yet but ill take the smiles. He is ticklish under his arm pits. Who isn't?

 His new dog hat.

Aunt Sarah, feeding and Cousin Addison. Who is a great baby sitter! Jake started to smile at her when she sang to him.

My little dude! I have so much love for this little boy. I can not get enough of him and kisses. I can't wait till he will start giving kisses back and not rubbing his boogers on me. Like he just did. :) 

Growing...

Little Jacob loves to eat. Eating every two hours now. Four-five ounces. He is going through a growth spurt.  He is cooing and chatting back to you. He is sleeping better at night. Right before we lay him down he will eat five ounces and then wake up around 1-2 am. Then again at 5 or 6 to eat. Then usually he will go back to bed in his swing until the next feeding. 

Here is my favorite picture my mom text me while she was sitting him on Monday. He is such a happy baby. Getting so much love from everyone. 

Here he is napping this morning. When he is napping in the morning you are on the couch napping next to him. I am still tired tho. I need an 8 hour night with no interruptions. He started to rub his face on you and bury it in your arm pit. He likes to fall asleep like this. When you have him on his stomach, he bounces with his legs. Pushes on your thighs. He is a very strong little man. 

First day back at work

Ban I know I haven't posted since Jacob came home but I've been busy with him. Either he is eating, sleeping or crying. Eating is a chore to him. Half the time is sleeping through his feedings. When you want him to burp he doesn't then screams because it hurts his belly. I swear the neighbors probably think I'm hurting him. It's sad. 

I think more of it is his intestines are reworking for him. He crys in pain when he try's to toot or poop. I feel so bad for him. 

Today is my first day back to work. Since Jacob can not go to day care his first year, work helped us with tony and my schedule. Today, tony worked 4am-12 pm. I work 1 pm to 10. So seeing tony will only be in passing. Some of our schedules will be like this.  Hope he takes a nap with tony because it was a long night and no sleep for any of us. 

No daycare for Jacob is because he is more prone to germs with having cf. Bacteria can grow faster in his lungs and put him back in the hospital. They really want to wait till 6 months to give him a flu shot. 

Here he is today holding his paci once again. Sometimes it's ok other times he pulls it out and cries again  

Yesterday we went to the Langer's. He loves staring at people. Here is Jack, my cousin.

Jake, Alex and jack. 

Baby sitter Addison. She loves her cousin. Always wants to help out with him. 

WE ARE GOING HOME!!

Today is the day, Jacob is coming home. We were waiting for the 10th treatment of his antibiotics. Should start it around 3PM and takes 4 hours to complete. Other than that, his belly looks good and he is eating. Well, I should say he loves to eat during the day. At nights, he only eats 2 ounces. He is usually sleeping while eating. We have to wake him up to eat still because they are wanting him to gain weight.  He actually lost weight from last night. As a CF patient, his body doesn't nourish all of what he needs. Thats why we are to give him enzymes to help. So with him eating is a big thing. and continue to gain weight.

 Here is Jake, June 15 when we took him into the ER. The second picture is of him today. He was so sick. I just can't believe that it would happen so fast over night. If you think something is wrong, don't hesitate, take your child to the doctor! If we waited any longer, after surgery, his intestines would have burst. I wouldn't be able to live with myself if something worse happened.

This is dragon breathing treatment. He is tolerating it more. Mixed with saline and Albuterol. This helps with breaking up any mucus in his lungs. He coughs and sneezes during it. 

Today, a nurse who will be coming to our house weekly and change Jake's broviac dressing came in and showed us how to flush his IV line. Showing us how crucial it is to make everything so sterile. Another lady came in and gave us a percussion massager. Said it was covered from insurance. Jake loves it. We have to do this twice a week. On his back, front and sides under arm pits. 

 Yesterday, we had two visitors. Kathyrn from work brought us lunch. Thank you so much! She brought us Olive Garden, soup and salad. Our room reeked of garlic, but that was ok. It was good!

 Here is Jobe feeding Jake. Stared at him the whole time while Jobe sang to him.

 One of our nurses we had during the week, who is obsessed with Jacob, turned on the slushy machine and gave us slushies. We told her the story and felt bad I guess.

Here is another picture of today. Will miss all of the nurses but glad to sleep at home. We have a follow up apt with the surgeons, next week, so hope they will see him progressing and then take out the broviac.

He Loves Visitors

Here we are still in Jake's hospital room. Slushy machine is turned off and we are both bummed. They are so good! I don't want to turn it on because they it is so loud. Our bathroom is right next to the room, you can hear it from the bathroom. Here is a picture of Mr. Jacob at nap time. I brought him a little outfit that buttons in the front so they can still get to his IV. Now he isn't naked.

We had some visitors today, this morning mom came around 9AM so I could go home and get a shower before my hair apt.  Thanks MOM! Jake already loves his Pam'ma. I am blessed to have an awesome aunt who does hair. Thanks JULIE!  She did a Brazilian Blowout on my hair. Hope its not so fuzzy when its dry. I saw Sam from work in the parking garage. He brought his son in for a cancer treatment. I think between Sam and I we know this hospital from one end to another.

Tony came up after work, around 2PM. Mike (Tony's dad) came up and brought up Marion's Pizza. Thanks Mike! So much better than hospital food. Theresa was here too when she got off work.

Around 7PM, my friend Katie, her daughter Brynn and mother, Mamma P came to visit. That was very sweet of them to see Jake. He appreciates all his visitors. He is so loved. A lot of the nurses and doctors say Jake's room is the most popular room with visitors. Even up in the NICU. I tell them he is a celebrity.

Jake is now having his breathing treatment. He gets this four times a day. Then percussions to break up any mucus in his lungs. CF patients have more sticky mucus than usual and leads to respiratory infections if not done. He sometimes tolerates the treatment, or he is screaming on the top of his lungs.