The boys

Good day! I can't believe it's been forever since I posted, a lot has gone on with our amazing family. I can't believe these boy turn 4 n a month.

Joe: has had 6 ear infections in 3 months and currently has one, he gets his 3rd set of PE tubes on Tuesday/ Otherwise Joe continues to do well

Jacob: continue to have issues and keeps me super busy. He now has two huge diagnosis one he has hypogammaglobulinemia it is an immune system disorder that falls under (Common variable immunodeficiency) (CVID) Jacob also has low to no antibody response so like you or I have a normal system Jacob has little to no system which is why when he's sick he lands us at ACH. Jacob does weekly IVIG and daily prophylaxis antibiotics. Since Jacob has CVID he often wears a mask when out in public and especially when we go around a big crowd. Jacob also started 3 months ago on botox for spaciticity for his cerebral palsy. Jacob rocking his weekly IVIG infusion.

Tomorrow we have several appts with our amazing team at ACH: first we start off in the dental clinic with both boys then Jacob will get his botox and then we end in pulmonology for both boys. Due to Jacob having CVID he will have to take a different abx prior to any/all dental care. We meet our amazing new pulmo doctor tomorrow we are very familiar with him and he has signed  off on things that Jacob needs.

Bob and I are doing well, we are in the process of hiring a contractor to put on our new roof. We keep busy with both of our jobs, the boys and our garden.

Update on our boys and family.

I first want  start off with Happy Thanksgiving, I can't believe its been since April that I wrote. Time has flown by. We have been super busy since April. We have had many medical trips to Little Rock our home away from home, we have had to change our pediatricians, we have also had to make some very hard decisions regarding Jacob's care.

 Joe is doing great and keeping me busy, He just turned 3 in August, he loves Peppa Pig. He just tested out of daycare so he has all next week and then he will be staying home with Jacob and I. He get's minor colds and has allergies but nothing like his brother Jacob get's. Joe is a happy, smart, toddler for the most part. He currently weighs about 34 lbs.

Jacob has had a very rough few months. He continues to battle respiratory illnesses. We have met with his team at Children's  several times. He had bi-lateral hernia repair and new tubes done in August. In October we spent 3 days at ACH and 1 day in the PICU. We are losing our amazing pulmonologist this coming week and I am very sad to see her go she has been nothing but amazing to our family. I made a promise to her before our PICU stay that I would keep in touch with her and I plan to do that via text messaging. We have also gained an amazing pedictrician for the boys. Although it is a drive an hour to be exact she is willing to do whatever we need to do for Jacob. In October after a meeting with Jacob's team we decided it was best to pull him out of therapies and daycare. We are now considered home bound with him and he get's nursing services and therapies all here in the comfort of our home. We also are meeting this coming week with Jacob's team. We are almost sure that Jacob has an immune deficiency of some sort,

Bobby and I are doing pretty good, we keep so busy with the boys. We celebrated our 5th wedding anniversary. We took a mini vacation trip as a family. That was our first vacation since we got married and our honey moon, We remodeled our beautiful kitchen, it's now our gathering place when we host get togethers and Thanksgiving and Easter. We love having family over,

update on the boys and life

Life has been so crazy busy that I haven't gotten a chance to update. We have been in Little Rock a ton lately. I have also been in constant contact with Jacob's medical team. This video that I am posting is what we call the ride. It is a vest airway clearance system. Jacob's lungs are pretty weak and so this vest system literally shakes the chest to help him cough or clear his secretions out. Jacob also has a new diagnosis of Bronchiomalacia it is softening of the airway. His left lung is definitely a lot weaker and more scarred than his right now. Jacob also a month ago today decided that he would give mommy and daddy a scare and went into respiratory distress. Thank goodness we know what to watch for in the days  prior and so we headed to ACH Er and he got IV fluids, along with several respiratory meds and got admitted for 4 days. We have an amazing pulmonologist that knows that I will call her when we have issues with him and so she had already talked to the attending and so it made it so much easier on us.  Jacob also just had his 7th surgery last week and we once again got admitted this time for precautionary reasons considering Jacob's history.
Joe is doing well. He loves playing with toys and loves going to daycare everyday. He has an ear infection  right now. He is definitely a big talker and says his ABC's.  Lately he is big in to tractor's. Everyday as we drive to school he says wanna see tractors mommy.
Bobby and I are doing well. We have been trying to keep busy. We have gone out on the boat several times and just finished remodeling our kitchen. In the next few weeks we plan to plant our garden and set up the boys water table and swing set.

Update on life.

Were do I start, I can't believe that Friday is Christmas and that the following week we will ring in 2016. 2015 has been crazy, the last month and half I feel like we have lived at ACH between both boys having tonsils and adenoids out and new PE tubes in their ears. Both boys had complications which lead us back to ACH after surgery.  Now that we got both of those done hopefully no more tonsillitis around our house. I guess the big news lately is we have the vest system.  With Jacobs lung disease the vest makes our lives easier. The vest blows up and shakes Jacobs chest so that his  don't get sticky. He loves it and often calls it the ride. We go back to our home away from home in 2 weeks from today.  Next week is crazy busy but in a good sense as one my best friends is getting married to the love of her life. I honestly will be shedding some tears that day as I stand next to her. I know she follows this blog. Sorry about not updating on here frequently Jacobs medical issues keep my incredibly busy. I know as of right now we have 2 trips to LR in January . I will try and post the next post in a few days and include the video of the vest.
Make sure that you hug your family a little tighter tonight as you never know what your life has in store.

Update on the boys

Wow, time flies when your having fun. Seriously I can't believe 2 years ago that my sweet precious strong handsome miracles were born. The last 2 years have been crazy busy with so many ups and downs. God has blessed us being their parent's. I can't wait to see what this year has in store. As of right now we have one big surgical procedure planned for Jacob that is October 6th, Jacob recently almost 2 months ago got diagnosed with EOE (Eosinophilic Esophagitis) it is Eosinophilic (ee-uh-sin-uh-fil-ik) esophagitis (EoE) is a recently recognized allergic/immune condition. A person with EoE will have inflammation or swelling of the esophagus. The esophagus is the tube that sends food from the mouth to the stomach. Jacob is allergic to soy, dairy, and beef. So we are constantly having to watch everything he takes in by mouth. Along with EoE he has had strep throat 5 times this year and so while he is under for his EDG with biopsies they are doing a T&A along with replacing his PE tubes that are full of granulation tissue. Jacob's throat from the EoE is pretty  bad. Jacob also just qualified for a portable suction machine that will make our lives a tad bit easier. Jacob requires a lot of suction due to his chronic lung disease, the cerebal palsy, and the EoE. Both boys are in daycare full time and they love it, they both go to a special daycare that is for kids with medical or developmental issues and you have to qualify to go to this daycare. It has been a blessing and they are like family. The month of September is already plenty busy tomorrow the boys and I are going on a daytrip with one of my best friends to go hiking for the day. Next weekend is DH's family reunion, the 19th is our only free weekend in September and then the 26th is DH's company picnic and then we are just relaxing at home the weekend of the 3rd of October as Jacob has his surgery on the 6th and we be inpatient probably 2 nights. The 24th of September we see Jacob's amazing GI Dr Prince just for a follow up since we have had to change some med doses around. We are constantly busy or on the road. Tomorrow I can't wait to get away for the day of course we have to pack all of Jacob's medical supplies. Hope that everyone is doing well. 

update on our crazy busy lives

I wanted to take a few minutes and update on our crazy busy lives. I just realized when I logged on to my blogger that it was in February. We have had so much happen since then including being flown to children's. March was pretty quiet around here, we also fired our old ped as he made the comment to me that being a stay at home mommy is very easy and I was like okay I said so you obviously have never had a child with medical issues such as Jacob and Joe's. I was like I am on the phone constantly with children's or some of their doctor's. We hired Dr. Wilbur who is amazing with the boys and his office staff goes above and beyond for them. April was very very busy. April 12 is were I will start the boys and I went on a play date with a good friend and they had runny noses and so I didn't think anything about it and so that Monday knowing Jacob's history we started doing albuterol and just making sure his team in LR knew what was going on. The 14th like any other day Jacob had therapy but had home health come by first for a weight check and they listened to him and said that he was clear but was coughing a ton, I sent him to therapy and when I picked him up their nurse who is amazing was like his 02 was running 95-96% and I was like okay at that point I wanted to make sure his pulmonologist knew what was going on, so I called and gave them an update. They called me back and wanted a chest x-ray the next morning and so I was like okay once I get those results I will give you all a call and you can decide on what you guys want to do. That night was not a good night Jacob was having issues breathing so first thing in the morning I called the ped's office and they are like can you be here by 9:15 and I was like yep, so we arrived and they check both boys in. Dr. Wilbur comes in and listened to them and steps out and says nurse alert which means he needs a nurse and he ordered her to get albuterol and got that going and started writing order's at that point I knew it was not good and he was like what hospital do you all want to go to I was like ACH and so he stepped out and made some phone call's next thing I know he says angel one is coming to get them. He sends us to the ER to wait for Angel one and when we get their things aren't good my dad is arriving to help Bob out so that I can run home and grab some clothes and stuff for the boys. When I get back they have Jacob an IV started and have him on oxygen because his 02 keeps dropping and I was like okay, so I give pulmonology a heads up that we are being flown their and their like okay. They tried I mean 6 times to get an IV on Joe and were never able to get one and I said enough and to wait for Angel One. Joe was also hooked up to oxygen. I stepped out of the room to make a few phone calls to let my boss know what is going on and so when I got back Angel One was their and they let me fly with them. Long story short we got released after 24 hours and only to have Jacob re-admitted via the GPC. May was really busy here with multiple follow up appt's. June has been busy with appt's also. July we will be spending a week in LR for some procedures for Jacob and for multiple follow up appt's, I am sad because Bob can't go with me and so my mother in law is going with me. 

2015

Wow, I just realized how long it has been since I posted last on the boys. Our lives continue to be hectic, crazy busy. It seems like most every other week  any more that we are at our amazing children's hospital with Jacob. Next week we are back their for 2 appointment's one with one of his regular clinics and one with one of the new clinic's that we have added to Jacob's medical team. He has so many doctor's their at children's and they are all amazing. Since we are in RSV/Flu season we have to take extra procautions with Jacob because of his lungs. Unfortunately those extra procautions weren't enough last week and he landed in the hospital with the Flu, croup and bronchialites. He was a pretty sick little guy. He also has a new diagnosis that we have known for quiet some time that was very possibly and it is Cerebal palsy.
All of the clinic's that Jacob see's right nww are all on the same page with his diagnosis and we will continue to strive for the best for Jacob no matter what it takes. We have an amazing medical team at Children's. Unfortunately our pediatrician here in our local town sucks and his nurses are rudiciulous and when they say that they will call you back they won't. Jacob has an appt with his tomorrow and I will not be nice to the nurse because when I called yesterday she told me she would call me back and she never called me back. It goes same day same story with the ped's office.
Sorry if I am a debbie downer today I have lost my trust in some people especially in DH's best friend who was in our wedding we had an earlier situation today that just makes me sick to my stomach thinking about it. He had come over earlier this morning to see the boys and I and then while I was gone running a few errands with out the boys my mom was here, the jerk supposedly lost his wallet here and stole some stuff from us. We found the evidence in our bathroom. The cops were called and a report was taken.