Amelia!!!

Amelia arrived last night to visit us for a few days. Oh what wonderful medicine for BJ and I both!! We have missed her sooooo much.

In the Lobby

Dinner Together

Seeing Thatcher

So Happy

My WONDERFUL sister took the task of flying Amelia up. I cannot thank her enough. We hated that we missed her first flight but wanted to see her so badly that we didn't even care really. It is difficult because I cannot pick Amelia up. She does not understand this of course, but my mom and sister are helping with her while someone needs to be with Thatcher at all times. Amelia has been through alot the last few months as well, and I pray for her too. She does not completely understand but has shown strength and resilience in her own ways.

We are so glad to see her and look forward to getting back to our "normal" again one day :). Thanks Jenn for the spilled chocolate milk, blow outs, and toddler fits...so good to see you both!

1 Week

1 week ago we were in a much different place than today! I feel as though we are back on the road to recovery after our setback on Sunday. Yesterday was much more relaxing and pretty uneventful. Today has pretty well gone that way also. Thatcher's liver labs are looking great and his numbers continue to fall, indicating a good functioning liver. His total biliruben was the lowest ever at 1.7 today. I held Thatch alot yesterday.

He seems to be in more pain today, which is understandable after being opened twice in 1 week. He is now completely unhooked from IV's and takes everything orally, including his pain meds. He still has the IV in his neck for lab access. He has had a fever off and on (he does not have one currently), but all cultures are clear (meaning they don't show a bug or other reason for the fever). He is finally resting with some extra pain meds. He is continuing to get breast milk in a bottle every few hours.

BJ has been by Thatcher's side constantly for the last several days while I'm still recouperating. He has finally gone back to our room for a break leaving me and mom to care for him. I still cannot lift him and probably won't be able to for a while. I'm extremely sore and staying on top of my pain meds. It's hard for me to stand completely upright and hurts to laugh, cough, blow my nose, etc. I can only imagine what Thatcher is feeling :(.

We went through our first round of discharge teaching today. We have a large green binder with tons of information on medicines and different instructions for Thatcher's care. While it is overwhelming, it is somewhat of an improvement from where we were before transplant. Thatcher already takes fewer medicines than he had, and we have hopes for him to take even less in the future. His most important medicine, Prograf, is the immunosuppresant that keeps his body from fighting his new liver. He will be on this forever, as of right now, and these levels are monitored very closely and adjusted alot. Thatcher will experience rejection at some point, but it is closely monitored and can be maintained. In general, the further out from transplant, the better he is expected to do.

Hiccupps

Monday Before Transplant
Saturday March 26, 2011

We knew we wouldn't come through this without any hiccupps, but regardless, going back to surgery today was very scary. It doesn't seem to be a major issue, but Thatcher is quite a bit of pain having been opened up again (poor baby :(). I do feel we are in great hands and hope that it doesn't have to happen again. Currently, he is resting on pain meds.

Although we may have had a setback today, we are not going to give up on Thatcher and try to stay hopeful. The pictures above give me that hope. Look how much better he looks from Monday before transplant to yesterday! I can only imagine 1 month from now :).

I'm doing better actually now that I am off my Oxycodone. It was making me super nausious. I'm mostly on Tylenol but at least have a little appetite now.

Thank you everyone for your continued support. We know this is a long road. Thanks for going along with us. Right now I am prying for Thatcher's comfort and full recovery.

Out of Surgery

Thatch did have to go to surgery to check out the bleeding but we are already out. The docs said it was nothing major and nothing to do with his new liver really...thank God! We are going back to our room on 7. Thanks for the prayers.

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Prayer Warriors

Ok, prayer warrior friends, I don't feel like I have alot of time to post this, but please spread the word that Thatch could use your prayers. He's bleeding and has a little fever. They are giving him blood but his drains are showing more blood. They stopped his blood thinner but may have to go back into surgery to figure it out. I pray it resolves. Thanks!

My Boys

I got to see BJ and Thatcher today!!! It was so emotional and absolutely wonderful.

He looks better than I even imagined. BJ was so good to me while we were separated and even sent me beautiful tulips. Mom and dad got me the sweet statue of the mother holding the baby.

They took labs , removed my JP drain out of my side (yuck), and took the IV out of my arm. I was discharged on Magnesium, pain meds, and stool softener. My abdomen is very sore and I'm fighting the side effects of the pain meds, low appetite, slow bowels, and some nauseau so I kind have to make myself eat. I get tired very easily, but do ok if I make sure and keep medicine in my system.

First time in the chair on Wednesday

Geting my last IV out

BJ wheeling me to see Thatcher at Children's

"Moving the bowels" is important after surgery (for me and Thatcher). Actually, I got a text from BJ last night titled "Poop :)." He didn't have to say anything...it was Thatcher's first dirty diaper and it was BROWN!! It was really Thatcher's first brown dirty diaper ever. I won't share on the blog, but it was a beautiful sight to me :).

Thatcher is resting well. He is on pain meds as needed and even had his first bottle today. He scarfed it down and wanted more, but they want him to start slow so he's eating 1 ounce every 3 hours until tomorrow.

Friday update

Thatcher and I were both moved to rooms about the same time late yesterday afternoon. He is on the regular floor now...can't believe it!! We were told he would be in ICU about 10 days. We hate to be overly optimistic, but we are enjoying all the good news as it comes but remembering there will be ups and downs. I thank God for giving us the relief he has given us the past few days though, especially while I heal. I still cannot believe I haven't seen Thatcher or BJ, but BJ is doing his best to keep me posted.

BJ texted this morning and said Thatcher slept well last night. He said is up right now getting his daily ultrasound done and looks good. His ultrasounds have come back good up to this point. These are important and show the blood flow through the veins/arteries in the liver. I think Thatcher is starting to keep his caretakers busier as he wakes up more. He can't of course roll over on his belly so they have to keep him from doing that. Speaking of...here is the big incision:

I'm still sore and on a clear liquid diet. I have a cath, neck iv, and jp drain connected to me so look forward to maybe losing one of these today. I also really need a shower...the sponge baths aren't cutting it anymore :). Please pray we continue to heal.

Awake

I still have not seen sweet Thaycher yet, but am posting this from a chair in the hospital. Thanks to modern technology I got this video from BJ earlier today:

The whites of his eyes are much improved and they will be moving him to a step-down ICU room this afternoon. I'm sore, but have made the big move from bed to chair today. I had a fever after surgery so they kep me in ICU 1 extra day on antibiotics. I feel much better. I would do it all again in a heartbeat!

Transplant Day

Jessie and Thatcher have both been through a lot today. Jessie is across town in the adult hospital asleep on pain medicines and Thatch is here beside me in the ICU. Jessie left this morning at around 5 am and was getting prepped for surgery shortly after. Thatcher was on Tylenol, an inter-venous benadryl, and an immune suppressant so he was resting pretty well even though he had not eaten since 10 pm. The surgeon came to the 7th floor at around 7:45 and they took us to surgery prep. I signed a few more consent forms and Thatch was on his way to have his poor excuse for a liver removed. After a couple hours I found out Jessie was doing well and that the lobe of her liver was anatomically correct to match up with Thatcher's. They removed approximately 30% of her liver and put it on an ambulance headed over to us at Children's. The next news I got was that Jessie was out of surgery and in the ICU at Montefiore in stable condition, mostly incoherent but doing well. Around 5pm the surgeons came out to talk with me about how well his surgery went. They said Jessie's liver looked great and was the perfect size for Thatch. When they got it all hooked up it "perfused nicely" and due to the size they were able to close him up both muscle and skin. They did not have to give him blood and very little fluid. Overall, in their opinion, the procedure went as good as it could have and that's exactly what we have all been praying for.
Somebody has the unwanted task of keeping Jessie away from here until she is released around 5 to 7 days from now. Good Luck with that.
As for all of us we know that we still have a long road ahead but feel like this is a huge step in the right direction. We always knew Thatch would never get better with the liver he was born with.

So here we are around around 17 hours later, they are still separated but in a special way closer together than they have ever been.

Waiting

Old liver is out, new piece is going in. Jessie is in ICU, her surgery went well.

We Have Arrived

We arrived in Pittsburgh. We have been planning and preparing for this week for so long that I almost can't believe it is actually here. It is hard to comprehend - we are just going through the motions at times, but I know the Lord (and everyone's prayers) are carrying us through. It is almost impossible to prepare for something like this - my almost 8 month old son's liver transplant, my donor surgery, and being 500 miles away from Amelia, but somehow we have made it. "Somehow" has had alot to do with prayer, no doubt, and my husband BJ's constant effort and planning...he has thought of everything. He packed the car perfectly tight, like Tetris pieces placed strategically together.

We didn't stop for a second Saturday, probably so we would not have to think about why we were packing or what we were preparing to do. It has been quite emotional getting here, to say the least. One of the hardest parts so far has been leaving Amelia. BJ and I have decided it is probably harder on us than her though. She was so excited to go play with her cousins that when we told her, "Mommy and Daddy are going to Pittsburgh" she got so upset because she thought she was having to go. Still, waving goodbye to her in my sister's van was sad, but I know she is in good hands.

The ride to Pittsburgh was relatively uneventful. Thatcher slept most of the way and still slept decently during the night...thank goodness, we couldn't believe it! BJ's mom rode with my parents who followed behind us. We made a few stops to eat in Cincinnatti and Columbus and arrived here about 7pm. We are greatful and relieved that we got a room (1407) in the Ronald McDonald house because it is so convenient to Children's Hospital.

Today has been more eventful in preparation for our surgeries. I signed consent forms and was examined at the adult hospital, Montefiore, at noon. Thatcher was admitted at 2 eastern to room 714. He will get blood work and they will start an IV this evening with a few preliminary meds in preparation for surgery. He can't eat after 10pm and will be wheeled back to surgery around 6am. BJ and I will stay with Thatcher during this time. I will have to leave at some point to report to Montefiore at 5am.

So many folks have texted, emailed, and FB'd supportive messages. Please know we are reading them and smiling! Thanks for thinking of us and for sending up your prayers. The doctors and medical staff seem so knowledgeable that it brings us alot of comfort that things will be ok. It is in the good Lord's hands...thank goodness!

Some Details About the Surgery

Some questions I've been getting lately include what happens during surgery, after, how long will we be in the hospital, etc.

Surgery for the donor begins first. I report to the hospital at 5am eastern on the 22nd. I will be taken to the holding area around 6:30am to meet with the anesthesiologist who will place an epidural catheter for pain control and start an IV. I will then be taken to the OR suite. I have been told my surgery will begin about 7:30am. Thatcher’s surgery begins a couple hours later.

The liver has two lobes; a right and left which each have their own blood source. The gallbladder is attached to the left lobe. The donor will have what is called a “partial hepatectomy” – the surgical removal of part of the left lobe of the liver. Once asleep from the anesthesia, a breathing tube is placed down my throat, which is removed sometime after surgery.The surgeons will make an incision across the abdomen, just below the ribs to safely locate and remove the gallbladder and portion of the liver. It is necessary to remove the gallbladder since it is located under the part of the liver that will be removed. The surgeons remove about 25% of the donor’s liver and the gallbladder.

I’ll have a catheter to drain urine and another tube inserted through my nose and throat to my stomach to drain fluids (NG tube) so I don’t get sick during surgery. The NG tube stays in place for 1-2 days after surgery until the bowels begin working again. During surgery, a small plastic drain (JP drain) will be placed near the abdomen incision to allow fluids to be drained while healing after surgery. The drain is usually taken out about 5 days post surgery. The operation takes 5-10 hours.

Much of this is true for Thatcher’s surgery as well (catheter, NG tube, JP drain, etc.). They'll remove all of Thatcher’s liver and replace it with my left lobe. The liver will regenerate in both of us and should return to normal size in about 2-3 months. The part of the liver that was taken out does not grow back. What is left of the liver grows to fill the space of the part that was removed. In fact, my 25% may still be too large for Thatcher so he will have to grow into it. Many times, the recipient comes out of surgery partially open a few days, while the swelling goes down, before completely being stitched up.

My scar is commonly referred to as a "mercedes scar" because it looks like the Mercedes Benz emblem (minus the outside circle). They will re-open Thatcher’s previous incision and continue across to the other side.

There are no long term side effects from my surgery. I won't need special medicine and won't need to change how I eat or live except for the short term...no alcohol for the months immediately prior and after surgery (I guess I did it for the 9 months he was in the womb, what’s a few more months!)

Like any surgery, there are risks, the handout I got on my surgery said the most common liver related risks include bile leakage where bile may leak from where the surface of the liver was or bile duct was cut (5-15% chance). Another possible complication is bleeding since the liver has a very rich blood supply. Other possible complications that may occur after surgery are the development of a hernia (if the muscles don’t heal properly), infection, and blood clots in the legs. Thus far, the death rate in the US for a living liver donor is about .2% chance...it’s even lower for pediatric living donor because they have to take less of my liver.

We are terrified, excited, anxious, and all of the above. We are also hopeful. The odds are much better this time around than with Thatcher's first procedure with success rates for 1 to 3 year survival rates in the 90th percentile. Please continue to pray for strength and healing for our family.

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Liver Education

We’ve learned a lot more about the liver than we really ever wanted to know. It obviously does a lot and you can’t live without one, for starters. I vary on how I feel about all the information out there – sometimes I find it fascinating, but the fact that it is Thather’s reality makes me cringe at the thought of these bad things happening inside his little body. Sometimes I just don’t care what is wrong with Thatcher’s liver...just fix it! Thank God there are great doctors out there that do know what is wrong...and can fix it!! I pray for these doctors everyday.

Below is some background information and other terms we’ve become all too familiar with. If you are like me, and close to our situation, you may find some of this information depressing. Feel free to skip ahead, but remember to stay positive...we’re going to get a healthy liver!! Also remember that thanks to the living donor option, Thatcher has not and will not have to experience many of the complications and symptoms of a failing liver!

The liver, the largest organ in the body, is essential in keeping the body functioning properly. It removes or neutralizes poisons from the blood, produces immune agents to control infection, and removes germs and bacteria from the blood. It makes proteins that regulate blood clotting and produces bile to help absorb fats and fat-soluble vitamins. You cannot live without a functioning liver.

Thatcher has biliary atresia, where his liver does not have the proper biliary system to drain the bile it produces. This causes the liver to become damaged from scarring, or cirrhotic. In cirrhosis of the liver, scar tissue replaces normal, healthy tissue, blocking the flow of blood through the organ and preventing it from working as it should. This is when a liver transplant becomes necessary.

Many people with cirrhosis have no symptoms in the early stages of the disease. However, as scar tissue replaces healthy cells, liver function starts to fail and a person may experience the following symptoms:

• exhaustion
• fatigue
• loss of appetite
• nausea
• weakness
• weight loss
• abdominal pain
• spider-like blood vessels (spider angiomas) that develop on the skin

As the disease progresses, complications may develop. In some people, these may be the first signs of the disease. Complications of Cirrhosis:

• Edema and ascites. When the liver loses its ability to make the protein albumin, water accumulates in the legs (edema) and abdomen (ascites).
• Bruising and bleeding. When the liver slows or stops production of the proteins needed for blood clotting, a person will bruise or bleed easily. The palms of the hands may be reddish and blotchy with palmar erythema.
• Jaundice. Jaundice is a yellowing of the skin and eyes that occurs when the diseased liver does not absorb enough bilirubin.
• Itching. Bile products deposited in the skin may cause intense itching.
• Gallstones. If cirrhosis prevents bile from reaching the gallbladder, gallstones may develop.
• Toxins in the blood or brain. A damaged liver cannot remove toxins from the blood, causing them to accumulate in the blood and eventually the brain. There, toxins can dull mental functioning and cause personality changes, coma, and even death. Signs of the buildup of toxins in the brain include neglect of personal appearance, unresponsiveness, forgetfulness, trouble concentrating, or changes in sleep habits.
• Sensitivity to medication. Cirrhosis slows the liver's ability to filter medications from the blood. Because the liver does not remove drugs from the blood at the usual rate, they act longer than expected and build up in the body. This causes a person to be more sensitive to medications and their side effects.
• Portal hypertension. Normally, blood from the intestines and spleen is carried to the liver through the portal vein. But cirrhosis slows the normal flow of blood through the portal vein, which increases the pressure inside it. This condition is called portal hypertension.
• Varices. When blood flow through the portal vein slows, blood from the intestines and spleen backs up into blood vessels in the stomach and esophagus. These blood vessels may become enlarged because they are not meant to carry this much blood. The enlarged blood vessels, called varices, have thin walls and carry high pressure, and thus are more likely to burst. If they do burst, the result is a serious bleeding problem in the upper stomach or esophagus that requires immediate medical attention.
• Insulin resistance and type 2 diabetes. Cirrhosis causes resistance to insulin. This hormone, produced by the pancreas, enables blood glucose to be used as energy by the cells of the body. If you have insulin resistance, your muscle, fat, and liver cells do not use insulin properly. The pancreas tries to keep up with the demand for insulin by producing more. Eventually, the pancreas cannot keep up with the body's need for insulin, and type 2 diabetes develops as excess glucose builds up in the bloodstream.
• Liver cancer. Hepatocellular carcinoma, a type of liver cancer commonly caused by cirrhosis, starts in the liver tissue itself. It has a high mortality rate.
• Problems in other organs. Cirrhosis can cause immune system dysfunction, leading to infection.
• Fluid in the abdomen (ascites) may become infected with bacteria normally present in the intestines. Cirrhosis can also lead to impotence, kidney dysfunction and failure, and osteoporosis.
  

(source: http://digestive.niddk.nih.gov/ddiseases/pubs/cirrhosis/ )

7 More Days

Only 7 more days until transplant. Thank goodness. This time next week I'll have less of a liver and Thatcher will have more of one! I say thank goodness because we have had a very rough week ending up at Vanderbilt Children's. Luckily we are home now and plan to stay here for the remainder of the week and get ready for our journey to Pittsburgh.

I began a blog post at the end of last week about how Thatcher had been growing increasingly uncomfortable and not sleeping well. About last Monday he began tossing and turning in his sleep and would not stay down. He was just so uncomfortable. We had clinic last friday and he lost 6 ounces and finally has some fluid on his belly (ascites). His belly is noticeably distended now. They started him on a low dose of a diuretic for the ascites and are giving him everything they can for itching. I'm sure he's itching, and he is getting his top two teeth to add to his discomfort. They can also get uncomfortable as their liver and spleens become enlarged and push on other organs...kind of like when you’re pregnant.

Anyway, I was going to share this information over the weekend, but could barely find the time between Thatcher not sleeping and needing to be held almost constantly. Finally Saturday night, something seemed to snap and we were up all night. We saw every hour on the clock instead of our usual 1 to 2 am. Thatcher was screaming and arching his back. He appeared in so much pain. He only slept out of sheer exhaustion from crying. I just held him through it so he would know I was there and count down the hours until he could have more medicine. This continued all day Sunday as well. While the screaming somewhat subsided, he whimpered and fussed constantly, sleeping for only about 30 minutes at a time. We could not get him to smile and his dark circles pointed to how tired he was. I could not imagine doing this until the 22nd and was devasted we had not chosen the 15th for transplant when it had been offered.

2am Monday morning, Thatcher felt very warm and his temperature was 100.6. His first fever since his diagnosis. Only 1 more week to go, hang in there Thatch! We have been instructed from the beginning to call if his fever ever reached 100.5 or above as this could be a sign of infection. At this point, I kind of thought we had been in the clear as far as fevers were concerned. I called first thing Monday and they wanted us to come in through the ER.

It had been Thanksgiving since our last inpatient visit...I had not missed it. We were admitted to run the gamut of testing and lab work. Thatcher got an IV to take blood and they catheterized him for his urine sample (poor guy!) By this point, however, his fever had gone down and he seemed to be gradually getting better. My biggest fear was postponing transplant since they will not operate if you are sick. We stayed over in a small holding room in the ER Monday night. After checking Thatcher for everything under the sun, no news was good news!! They found no reason to keep him and Thatcher left all smiles today! He slept better last night than he has in weeks. BJ suggested maybe he liked the hospital and had missed it...good thing I guess, since we're about to move into one.



For this reason, I’m tired but try to remind myself that when poor Thatcher is hurting I need to be there for him. Please pray for my strength to be there for him and Amelia. She really noticed all the attention Thatcher was getting while he did not feel well and has been pretty touchy lately. As surgery is approaching, I am becoming increasingly nervous and full of emotion. I’m very sad to be leaving Amelia for so long and have probably driven my relatives crazy with questions and instructions for her care while I’m gone. (Please be patient with me...apparently planning and overanalyzing is how I deal). I can’t parent from Pittsburgh, but I will try :).

We plan to leave for Pittsburgh Sunday. The caravan includes my parents, BJ’s mom, and our dear friends Ken & Erica. What a blessing! Please pray for safe travels for everyone. I report to UPMC Montefiore hospital on Monday the 21st at noon to sign papers and go over pre-op information with the doctors and nurses one more time. I will not be admitted until the next morning at 5am.

Thatcher will be admitted to Children’s Hospital of Pittsburgh on Monday the 21st at 2 eastern. I’m not sure how long my pre-op stuff takes, but I plan to be with Thatcher all I can before the surgery. He will get preliminary blood work and deal with other pre-op things until surgery. We’ll pack lots of toys for him to play with!

Here is a map from my hospital (A) to Thatcher’s hospital (B) – 2.9 miles:


View Larger Map

I can’t imagine how hard it is going to be to leave him before going to my surgery as I will be leaving him for several days during one of the hardest times of his and BJ’s life. He cannot eat after midnight but I hope he can sleep through most of it. Having to soothe a hungry baby who doesn’t understand why you can’t feed him is terrible! This was one of the worst parts of our stay at Vanderbilt during all of his testing. ***Dear nurses, is it really necessary to take his blood pressure at the risk of waking him and his growling tummy?!. I’ll assume that it is.

Lots to do before we leave, but not much else to do before surgery as far as testing is concerned, except try not to get sick (again)! Germ-X please!

Really Ice Maker?!

I woke BJ up Saturday morning at 6am saying, "Good morning, the fridge is leaking, Thatcher just had a blow out, and Amelia is ready to get up." BJ hit the ground running...the fridge is leaking?? A loud hissing sound was coming from the fridge and water was all over the tile in the kitchen, soaking the rug. BJ turned the water off to the fridge. As we were wiping the sleep from our eyes and drying the floor, BJ wondered what damage had been done downstairs in our basement. I took off...Yep, water was leaking from the can lights in the ceiling, the carpet was soaked, the couch and some of the toys were all wet.



Apparently there was a leak in the water line to the ice maker. I had to admit, I had heard something about 4am and simply rolled over thinking, "hm, that's awfully loud to be rain"...what a "girl" response. If I had only known!!!

Ripping out our basement was not what we had planned to do Saturday, but things happen I guess. At least it didn't happen while we were out of town...right?! BJ's brother helped tear out the ruined dry wall and carpet. My parents came over to help with the kids. We called the insurance company and are drying things out with large fans. I have a new sympathy for those victims of the Nashville flood...a little water can cause so much damage!

Needless to say we are very tired today. We're also a little sad to have lost our play area downstairs. BJ had remodeled the area a couple years ago.

Basement Remodeling

BJ is so talented. He pulled the basement apart and put it back together once...he can do it again. Everyone is ok, and that's what's important, right?! I would hope we have gained some perspective throughout Thatcher's ordeal. Still, it just kind of sucks!

Clinic - March 4th

Thatcher had a relatively good clinic visit Friday...he gained 12 ounces! We've been working hard on his bottles so maybe it paid off. He did have to get his blood drawn, but they got it on the first stick, yay! The nurses are really sweet and come around to see sweet Thatcher. I told them we have a date set for transplant, and they will be praying too.

He was prescribed a new medication, an anti-viral, that is supposed to also help with itching. He was taken off of one of his medications (Ursodiol) which is the "bile binder" since that really won't help at this point. I think that Thatcher has been pretty uncomfortable with the itching lately. His biliruben is still climbing at 10.4. Levels from last week indicate that despite all of his supplements, his nutrition level is still only about half of what it should be. According to Dr. Gillis, we've gotten about all the mileage out of this liver we can. However, she describes Thatcher as "remarkable" considering the condition his liver is in.

Only 2 more clinic visits until we leave for transplant (until we return of course)!

We Set A Date!

Thatcher’s liver transplant is now scheduled for Tuesday March 22nd. We received a call from Pittsburgh Children’s Monday saying, based on Friday's clinic, they did not want Thatcher to lose anymore ground before surgery. This was the news we were hoping for because we don’t want to see him lose anymore ground either. However, the reality is setting in. I’m getting nervous and anxious. It’s hitting me that I’m about to leave Amelia for a long time as well. We can’t plan very far into the future, but we know the first two weeks Amelia will be at home with family. We’ll have to wait and see when it’s best for her to come up and visit.

I don’t even know where to begin to pack for 3 months away!