This isn't a fairy tale. Our lives have been forever changed by Congenital Diaphragmatic Hernia. We're just trying to find a way to make it work.
Tuesday, October 30, 2012
Brightstart/Physical Therapy Day
Friday, October 26, 2012
A Look Back at Last October
Thursday, October 25, 2012
New toys
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Wednesday, October 24, 2012
Adventures on the go
10 tips to prevent a cold or flu
1) Wash your hands. They say you should wash your hands atleast 10 times a day. Everytime you use the bathroom, blow your nose, change a diaper, before and after cooking, after cleaning, before you eat, before you brush your teeth…You get the idea. Bacteria and viruses make you ill by finding a way into your body through physical contact. Don’t let them get you. Since most of your contact with the world happens through your hands, washing them can stop germs from making the leap from contaminated surfaces to inside your body.
2) Don’t touch your face. Even if your hands are relatively clean, chances are some germs will find a way to survive there. But these parasites will only compromise your health if they can get into your body. The easiest place to transmit illness is through mucous membranes such as your eyes, mouth and nose. Keep your hands away from your face (and food) and make it difficult for germs to find you.
3) Don’t eat group food. In flu season, completely avoid large party dips that involve dipping directly into the bowl rather than scooping with a clean spoon onto individual plates. Why? People may use the hand they just sneezed in to turn a chip around a few times until they find the perfect dipping angle. That means they are adding their nasty germs directly into the salsa. Yuck.
4) Get enough sleep. Your body can become run down without propper sleep, making you feel tired. Your bodys looses the energy to fight off illness without sleep and your immune system can weaken. Take it from a mom who gets no more than 4 hours of sleep interupted per night maximum. Im always sick! When I was able to get adiquate sleep, I was sick less.
5) Don’t drink alcohol. Another way to avoid coming down with something serious if you are starting to get sick is to skip on drinking for a few days. According to a new study drinking large amounts affects your immune system, making it weaker for 24 hours.
6) Hydrate. When your body is fighting an illness your immune system is working overtime. Make sure it has everything it needs to function at its best, including plenty of water.
7) Skip a workout. If you feel like you might be getting sick but aren’t sure, don’t go to the gym. Your body needs all its extra resources to fend off whatever virus or bacteria you’ve been exposed to, so save all the energy you’ve got.
8) Eat well. You may be disinclined to eat if you aren’t feeling well, but be sure that whatever you do manage to get down is nutritious and healthy. It’s not a good idea to eat foods that induce inflammation (simple sugars and starches) when your body is already weakened.
10) Take your vitamins. One of the most consistent things I’ve noticed that correlates with my health is how often I take multivitamins, and especially vitamin D. Most of us are deficient, so taking 2,000-4,000 IU is a good idea for almost everyone.
Refrences: Was taken from Summer Tomato
Its a good idea to keep hand sanitizer around the house, in the car, in your purse and in the diaper bag incase you cant get to soap and water. We buy it in bulk because of Liam’s CDH. We also keep mask in the house incase one of us gets sick so we dont share the germs with Liam since a simple cold usually means a hospital stay for Liam. We also sanitize all the surfaces in the house regularly with sanitizing wipes and sprays. When someone is sick we go into overdrive. We use pinesol for mopping the floors because its a sanitizer as well. We even use Lysol sanitizing spray for the air and the furnature. Of course because of Liam’s Chrinic Lung Disease we dont spray it while he’s in the room. When Liam’s toys fall on the floor we immediately clean them before giving them back. And whenever some starts to feel icky, we load up on B and C vitamins. If been hearing that if you drink a glass of 100% grape juice (the purple) at least once a day it can boost your immune system and keep you from getting sick with tummy bugs. We havent tried this yet but will as soon as we’re all done being sick. We also avoid taking him out in public during flu/RSV season.
Tuesday, October 23, 2012
Video Overload
Monday, October 22, 2012
Ive Got A Crawler!!
Saturday, October 20, 2012
Flu update
However I am still upset that I am sick with the Flu. Infact the only one not sick in the house is the same person who didn't get the flu vaccine. Its just not right! Lanie and I have doned our masks, been washing our hands, using sanitizer and taking meds in hopes that we will get better quickly. We've been spraying the house down with Lysol air sanitizer as well as wiping down all the surfaces with disenfectant. And because Liams room in with my room, I even slept with a mask on last night. Just praying we all get better quickly.
UpperCase Living Online Party
1) Visit Cecile’s Page
2) Click on Products
3) Click on “Associates with an open house”
4) Click “Shooting For Liam”
5) Shop Away!!
Happy shopping!!
Friday, October 19, 2012
Meet our new family pet...Bug
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Wednesday, October 17, 2012
"Family Outting"
Today we had a "family outting". We took Liam to Children's hospital for Pulmonology Clinic, Surgery Clinic and to donate the teethers S4L collected in the "Teethers for Teethies Drive". Our Pulmonologist listened to Liam's lungs after we told him what had been going on the past few days. Liam vommiting, possible aspiration, cough, stuffy nose, extra breathing treatments and even oxygen yesterday. He concured that he feared Liam had aspirated. There was some fluid on his lungs. He prescribed an antibiotic and oral steriods to try and prevent Pneumonia from setting in. He also prescribed Duirel to help get the fluid off his lungs. He said that because Liam has Chronic Lung Disease that he should ALWAYS be taking something like Duirel. He feels that it will also help him get through these winter months alittle "healthier". Atleast thats the hope. He knows Liam could get worse at the drop of a hat so couldn't guarantee that giving these meds at home would prevent Pnuemonia but its our hope and prayer that it works. We are also to give oxygen and additional breathing treatments as needed. If he gets bad, cant stop throwing up or increase in commiting, or larthargic, we are to take him to ER. Please say a prayer that these meds work and that Liam does NOT get worse. During our surgery clinic appointment, we discussed ALOT. 1) Because Liam is sick, our surgeon would like to see him back in 4 weeks to re-evaluate him. She would like him to get over this bug and have some time to be healthy. That way we know if his Hiatal Hernia is effecting him. 2)She agrees that Liam needs some kind of line put in weather its a broviac or mediport. Ofcourse Liam had a broviac when he was in the NICU at UCSF. I dont feel comfortable with a broviac and explained that to her. I prefer the mediport. She said if for some reason Liam HAS to go to ER and he needs a line then there is always a surgeon on call that can put a line in. She also said that most likely it will be a mediport. She said she didnt want to put him through surgery unless he absolutely needed it and that she would wait to do a line untill he needed it, unless she was going in to repair the hiatal hernia. 3)We dicussed Liam's right diaphragm. How every doctor and specialist feels that his feeding issues and lung issues are related. She agreed with our GI that they should run a test to check the blood flow and oxygen in his lungs. I asked what the odds of him needing the repair where. She said most CDHers dont need it and on the ones that she has preformed it only helped for a short period of time. She said rarely does it fix it long term. She said that what she would do was called a diaphragmatic dupilication, meaning that instead of moving the diaphragm lower in the abdominal wall, she would put stitches in the diapgragm to tighten it up. It would actually allow the lung to be able to expand. Because he grows and his diaphragm grows with him that as he gets bigger the stitches could need to be redone. 4) She said that if she had to go in to do one thing, say the hernia or mediport, she would just do it all. She would check with pulmonology and do the nessesary test to find out how it was working and if they agreed then repair everything at one point to avoint re-opening him. 5) We discussed Liam's scar tissue. Its a BIG reason why she doesnt want to preform surgery on him unless she HAS too. She said that when she was in there a year ago he had ALOT of scar tissue and shes afraid that it will prevent him from healing properly. She also mentioned that his splean is actualy plastered to his left diaphragm. The scar tissue from CDH repair has actually attached itself to the splean and locked it in place to the diaphragm. She said that she would also try to detach the splean if she could but she didnt think it was causing the splean from working properly. She said shes seen this ALOT in CDH kids. 6)Our surgeon also let me know that if she had to go in to repair the Nissen/ Hiatal Hernia that she would try to do it laprascopically but she wasnt sure if she would be able to this time. She thinks she will actually have to open him up. Same goes for the diaphragm repair. She said she had two ways to go into him laprascopically to repair it, the abdomen and the chest but she doesnt want to go in through the chest no matter what because of his lungs. Now were waiting to see what next month brings. We're praying Liam doesnt get any sicker, and doesnt have to go in to ER. As far as the surgeries go, we're just praying for the best possible outcome...a healthy, healing, happy little boy. We dont care about the scars, theyre a testiment to strength and God's healing hand. Shooting For Liam News: Today we delivered the donation of teethers to Childrens hospital in Madera. They were very happy and thankful for the donation and taking them right up to NICU. We are very pleased to have been able to collect 23 teethers to donate. Today we helped 23 babies and feel very honored and blessed to have been able to do so. We want to thank everyone who donated teethers to the drive and who helped spread the word. You guys are an awesome group of people and God has really blessed us to have such awesome people in our lives weather following Liam personally, prayiing for him, or just helping S4L. You guys are amazing! |
Friday, October 12, 2012
Liam's First Trip To The Pumpkin Patch
This time last year we went from UCSF to Children's hospital. We hadn't even been home from UCSF for 3 days when we had to rush Liam to Children's hospital for vommiting. We ended up spending the entire month of October in the hospital. Our tradition of visiting the pumpkin patch and taking pictures had to be forgotten. Two days ago ( wens the 10th) after Liam's doctors appointment, we took the kids to the pumpkin patch. We had alot of fun and took a TON of pictures, but im only posting a few. (Please keep in mind that Blogger isnt wanting to load so I am posting EVERYTHING through email. I can only hope that itll post) |
Thursday, October 11, 2012
Spookley
Today was a big day for Liam. He got to see his Grammie Goodes. We suprised her by dressing Liam up in his puppy costume. Then Grammie Goodes and Gramps suprised him with a Halloween gift. They bought him a stuffed 'Spookley the square pumpkin'. It was down right the cutest pumpkin ever. Pictures will be posted on a later date. Then today Liam did something that had me screaming for everyone to see.....Liam crawling. He actually made it 6 steps the first time, ofcourse I didnt get a video of that one but I did get this video. ENJOY!!! This is HUGE progress for our little lamb. (Pumpkin patch pictures with Grandma Bryant will be posted as soon as I get a chance) Visit Holiday Hill Farm's website for "Spookley the square pumpkin" Sent from Yahoo! Mail on Android |
Wednesday, October 10, 2012
10/09/12
10/09/12 Yesterday I took Liam to see his GI doctor: He's down to 19LBS. We discussed everything all the way back. Liam doesn't tollerate concentrated feeds. The only thing we found he tolerates is infant soy formula with Duocal. They we discussed how he tolerates just about every feed you try him on while on oxygen. ½ a litter is the difference between Liam tolerating feeds or not. So he's going to contact our surgeon at Children's, Jones, as well as Barb with UCSF PediSurg and see what they have to say. He is considering ordering a test of Liams lungs that would check the blood movement and air movement. His GI said "Liam is a puzzle I cant figure out and I just cant live with that. I NEED to know whats going on". We're praying they figure something out. For now Liam is staying on the infant formula because we are trying to avoid hospital stays until he goes back to see Jones at Children's on the 17th to discuss his Hiatal Hernia and a Medi-Port. GI feels there is something serious going on that needs to be figured out. He said its great that you know all you have too do is put him on oxygen to get him to tollerate feeds but that means there's something serious going on. Pulmanology doesn't want him on oxygen unless he's desatting and doesn't care if it means tolerating feeds or not. Its been an on going fight. They say "But it shouldn't work that way, it doesn't work that way". I say "Stop looking at Liam like a normal kid with normal functions. Liam is far from a normal case and should be treated as he reacts now as you expect him to react". Hopefully with our GI on the case we will get answers because quoting him "I'm kinda a pain in the ass" so he should be able to get an idea of whats going on. I get emotional when thinking he might have to go back to UCSF, 4 hours away and no way for my husband and daughter to come up and visit or stay with us. Every trip to UCSF is two weeks min because they know we live so far away and wont be able to jam back there. I hate the thought of beiing so far away from EVERYONE and being so very alone again up there and having absolutley no privacy what-so-ever with their shared rooms and bathrooms. But I know that if he has to go back there he will be in great hands with the Pedi-Surg staff and that it is part of God's plan. Our biggest stress right now is getting a call that he needs to go ASAP and not having the funds to do so. Im starting to contact CCS and Brightstart is bring out a coordinator that can give me a list of organizations that will hopefully help us with funding. I just pray we get enough of a notice before this happens. If anything we will have it all prepared and ready for next summer when he will be going back for a clinic. Today Liam had Brightstart. He showed them how he plays patty cake. "Roll em up and roll em up and throw em in a pan" It was adorable. He also played with mega blocks for the first time. He would take them out of the bin, then put them back in. It was great for toning his fine motor skills and teaching him to clean up after himself, a tool this momma finds to be a must have. They gave me a copy of the report from last week when the PT came out. She said he has low muscle tone and that there are a few excersizes that I am to work with him on daily. She said she reccomends comming out 1 to 2 times per month for now. He will still have Brightstart once a week but then they are adding PT to that. Hopefully with all of us working with him, Liam will gain muscle tone and be walking in no time. As of right now, he's not strong enough or loose enough. Tomarrow will be a big day for us. Liam has an appointment with our pediatrician. We'll discuss everything the GI said. Liam will get his 2nd flu shot and hopefully his first RSV vaccine. After that we are taking Liam on his very first trip to the pumpkin patch. Last year we didn't get to take him or Lanie because he was in the hospital. We are hoping that because we will be going early in the day, during a school day that there wont hardly be anyone there. We've had success with that plan before. |
Thursday, October 4, 2012
Another Drop On The Roller Coaster
1)Liam was released from Childrens and came home last Wensday
2)Big Sister Lanie wound up sick on Thursday
3)Lanie was perfectly fine on Thursday but Liam cought whatever she had...we think anyway
4)Liam continued to get worse then it seemed he was getting better. Our Ped though he was at the tail end of it.
5)Then Liam got worse again.
6)Liam had his PT eval. He will be getting physical therapy I believe once a week now
7)I tried him off feeds. He was back to him normal self. Laughing and playing and talking.
8)Started the Neocate Jr feeds back and within an hour he's miserable and vommiting and the circles under his eyes return.
9)I texted our Ped and got permission to put him back on his old regiment of Soy fomula (baby formula) and duocal and see what happens
10)Liam vommiting reduced by atleast 95%. He only vommited twice through the night instead of every 15min to hour.
11)He started desatting last night and finnaly at midnight I had to put him back on oxygen.
12)Waiting for the Ped to text back
Even after a week of no sleep, I was tollerating everything. But yesterday his pump decided it didnt want to work for awhile. I was upset, frustrated, irritated. I looked at Liam and begged him to eat. "Why cant you eat? Why cant you just eat?" As if just saying those words to him would change everything and he would suddenly start eating by mouth. I am ashamed I even asked that of him. Its not his fault he was made this way. And even though I know the doctors say its not our fault as parents for having CDHers but I have to blame someone and blaming God just doesnt sit right. I keep asking myself what I did wrong? Is this Karma? Do I even believe in Karma? I used to but since Ive done nothing to deserve to be going on this rollercoaster and am on the rise anyway, its hard to believe such a thing exsist. Besides my 4 1/2 year old didint do anything to deserve having her mother torn from her at every turn.
Now theres the oxygen issue. Its like we took several HUGE steps back and that it all started with formula change. Why cant the doctors just leave well enough alone?! One doctor says Liam can stay on baby formula until he's 2. Another says he has to be switched over now, another gives him maybe 2 months. All I know is Im sick of playing 'Musical Formula'. We went through this last year:
Similac
Enfamil
Enfamil Gentlease
Similac Sensitive
Nutramagen
Elecare
Enfamil Soy (any verson thereof)
Weve tried concentrating these formulas but he doesnt tollerate concentrated formulas so we had to start adding Duocal. Soy and Duocal was working perfectly.
And now since they decided he needed a big kid formula we've tried:
Pediasure
Pediasure Pectite
Neocate
Neocate Jr
All of which are concentrated. The Neocate is whats called an elemental formula, supposedly easier to digest. So was the Elecare and he couldnt handle concentrate. They said that if you add Duocal that it changes the formula and isnt a elemental formula after the addition. The other problem is that we know Liam doesn't have an actual food allergy to lactose but he has an intollerance and they dont make a soy based big kid formula.
"Hello Rock"
"Hello Hard Place"
So as of right now, Liam is back on soy baby formula with Duocal. That is until we see GI on monday and he decides to mess with it all over again.
Then bring on the oxygen. Here we were at the doctors office monday just talking about Liam's lungs. Our Ped made the comment
"Thank God his lungs are doing so well"
Infact we've all said it recently. But now here we are suddenly needing oxygen. Talk about a slap in the face. I know theres ups and downs on this rollercoaster, you just never get used to the blows. I should be thankful, I am thankful. In the grand scheme of things, Liam's doing wonderfully. Things could always be worse. We're gong to inch forward, and take giant leaps backward. This journey test your faith at every turn, tries to break it. I look at Liam, see his eyes, feel his head snuggled on my shoulder and I know, its worth it. Every second of this "torturous" journey is worth it.