Beckwith Academy of Excellence

In the Spring of 2009, while Alex and I were inpatient in Houston, Bruce enrolled Alex in our Elementary School to start Kindergarten. A Rite of Passage all parents look forward to and dread at the same time! Only a few short weeks later, our immunologist and Mito Specialist came into the hospital room where we had spent most of the past 9 months to tell me that Alex couldn't go to Public School. And so began our homeschooling journey.

Sometime around 5th grade, Alex got tired of explaining every time someone asked him where he went to school and so he started answering the Beckwith Academy of Excellence. Over the years, we have had friends ask to join, but our Academy has always had an enrollment of one.

Fast forward 11 years and we excitedly enrolled Maddy in first grade at the same school where we hoped to send Alex all those years ago. Enter COVID-19...it is not safe for us to send Maddy (who has an immune deficiency as well as many other diagnoses) to school. So for the first time in it's history, The Beckwith Academy of Excellence is enrolling its second student.

An update on Alex...As far as surgery he is doing great and is mostly "recovered". However, he is still battling pancreatitis and with it nausea and pain. His spirits are good and we have a decent pain management plan right now so we are doing well overall.

Thank you for continuing to love us and pray for us!
Ali

Thank You!

There are not enough words to thank you all for the love and support that you have showered on us over the past few weeks. I could never name everyone who has reached out, prayed, sent gift cards, brought a meal, etc. I do want to thank a few people and groups however. First, my amazing Mom's Bible Study. They set up the meal train and organized a lot of the logistics for helping us. My Camp Gladiator family...we always say we are #better together. The generosity of my 5:00 AM Central Crew literally brought me to tears. Judy, Amanda, Lauren and Anaise for loving on my girl and allowing Bruce to work and attend some important appointments of his own. And our dear friend Sonny for making sure I was taken care of at the hospital. More mornings than not, Sonny showed up with a coffee for me and on the night Alex was rushed to the PICU he offered to come to the hospital knowing he could be with me when no one else could. THANK YOU ALL!!!!

Alex and I are settling in at home. For those of you who have never spent time in a hospital, it is exhausting. You can't get quality sleep and the emotional roller coaster leaves you bone tired. Coming home is similar to coming home from vacation except you haven't had the fun and relaxation of a trip. But there is unpacking, laundry, mail, bills, etc. Then the added "work" of extra medical care and a 6 year old who needs Mommy's attention. I am starting to catch up, but it is a process Alex is doing pretty well considering. He is still having pain, likely from the pancreatitis more than surgery at this point. But he is so happy to be in his space and have his friends and games as distraction.

We are so grateful that this major surgery is over and we are on the road to recovery. I continue to pray that once Alex recovers his chronic pain is much improved.

Ali

Sunday Update

Once again there isn’t much to report. Overall, Alex is doing really well. His EKG today was slightly worse, but I am praying he can stay on the new medication. Hi pain level mid morning was better than his baseline at home. Alex lives with chronic pain everyday that is more substantial than most of us would tolerate. To hear him say he felt better this morning and wasn’t really hurting at all was incredible. I really hope we don’t have to stop this medication. Other than this one new medicine everything else has been stopped. We are on all our home medications. Plan is for labs tomorrow morning, another EKG and pulmonary function tests and then hopefully discharge.

Praying my next update is from home!

Ali

Saturday Night

We had a much better day. We added to new pain medications and have stopped one that we can’t go home on tomorrow. We are hopeful to stop the second one tomorrow. The only issue is that one of the new meds can cause an issue with your heart rhythms. They did an EKG prior to starting and we barely squeaked by. They will repeat an EKG tomorrow and again on Monday. As far as the pancreatitis, because Alex is already on TPN, there is no treatment beyond pain meds so as long as we can control his pain we can still discharge on Monday. They would also like us to complete pulmonary function tests on Monday.

Alex laid flat in the bed and did not move until after lunch, but once we had the new pain meds on board he perked up. Zoey came for a visit, but we decided not to keep her here because of how bad he felt this morning. She was SO happy to see him. She jumped right up in his bed and cuddled up with him and Bruce had to drag her out when it was time to go.

While Bruce and Zoey spent time with Alex, I played with and cuddled my baby girl. She was so happy to have some time with Mommy, but was really sad when it was time to go home. She was also upset that she couldn’t see Alex. It will be good for all of us when we are back under one roof. At this point we are really just ironing out final details and making sure our pain plan is good and we should be able to head home.

Thank you to everyone who has supported us in so many ways.

Ali

Saturday Morning Update

I apologize for not updating yesterday. I know how much you love my boy and want to know he is okay. Yesterday was extremely hard emotionally. We knew coming into this surgery that recovery would be tough, but we have definitely had some unexpected complications. No Matter how much you try and prepare it is still hard to live it. Alex is tired of hurting and feeling bad, not just for the last 9 days, but for the last 16 years. He feels like there is no hope of ever feeling good. Usually, I he (and I) are excellent at trying to focus on all the good, but yesterday’s was a day to feel the hard emotions and cry and yell. As a Mom, I wish so badly I could take away his pain physical and emotional, but all I can do is let him know that I hear him and I am here for him.

Medically...Nephrology has stepped out. Hematology is happy with the dosing of our blood thinner so they did not stop by either. Palliative care cam e by and checked on us. Alex met with his Clinical therapist and did some biofeedback.  Endocrine cam by and we decided to switch his steroid to what we use at home that he typically does better with.  They did not make any other changes. The hospitalist and I went through everything and discussed discharge criteria so we are all on the same page. Pain came up with a new plan to try and help him feel better while limiting narcotics. Unfortunately, the medication they wanted to use required an EKG and they needed a parameter to be under 450. Alex’s came back at 460 so they were asking cardiology to look at it, but we were not able to start the new medication yet. GI was the last to come by and we let him know that Alex was complaining of increased pain and  nausea, but not surgical pain. Dr. O tried to reassure Alex that even though he feels like it isn’t going to get better this is just a bump in the road and he will continue to improve, but it may be months before we see the full benefits of surgery. Based on Alex’s symptoms he did want to check another lipase (pancreatitis lab).

Last night when we started to give Alex his meds he became extremely nauseous and was retching (he can’t vomit). We had to skip about half of his night time meds. We did get him a little more comfortable and he slept through the night. He woke up this morning really nauseous and hurting again. His nurse let me know that his lipase is high and he likely has pancreatitis. We did minimal meds and he has been very quiet this morning. He doesn’t want to talk or move. He is just laying watching his iPad.

The original plan was for Bruce to bring Zoey to us today at least for the day, but possibly to stay. That plan is on hold for the moment. i am trying to get a sense from Alex of what he wants. When he has pancreatitis, he is extremely sensitive to smells and any smells make him very sick. I am worried that if Zoey smells at all he will do worse with her here. Had I known, I would have had Bruce give her a bath yesterday.

He may just bring her for a short visit and let me sit outside with Maddy for a few minutes. My girl and I need to hug each other!

More than anything Alex wants to go home to his bed, his space, his friends, our med schedule and the ability to distract himself. Please pray that we can come up with a plan to get us home Monday as expected.

Ali

Thursday Update

I think today is the first day I really don’t have much to update which is really good! We have started the process of weaning pain meds which is hard and not very much fun. We have also added extra reflux meds because he is having increased reflux.

GI, Endocrine, Surgery, Hematology all came by, but did not make changes. We have been moved back to the Chronic Care branch of the Hospitalist Tehama Dan this week one of our very favorite doctors is in charge of our care. WE took time to go over everything in detail this morning and make sure he was caught up on everything that has transpired in the past week. We have 2 main criteria for discharge...one to be off IV pain Meds and two to be back to normal steroid dosing for our adrenal insufficiency. We finish the strong antibiotic we are on around 11:00 PM on Saturday. Assuming we can meet our other two criteria the plan is to discharge Monday or Tuesday.

Alex did get up and walk one lap around the floor today which is by far the most he has done. He is restless and really wants to go home.

Please pray for pain relief and relief from the fatigue and boredom of a week in the hospital. We are both ready to be in our space and with the comfort of our beds and our pups.

Ali

Wednesday Update

We have had a GOOD day!

Let me see if my poor exhausted brain can remember everything! I had sent a message to our pharmacist and Dr. O last night about the TPN. Our pharmacist sent me an email first thing this morning that she was so sorry and she would get to the bottom of it. Dr. o said not to worry that he would be sure that things got fixed for today. It is nice to wake up knowing there is support.

We saw surgery first thing this morning and from their side of things they are really happy with how everything is going.

 Next we saw the hospitalist  She was someone new to us, but earned big brownie points because she came in and rattled off all of the things she had changed or “fixed” or started working on before she even came in. She was on top of everything and wanted to know what else we needed. I love someone who is organized and gets things done!

Next we saw nephrology. Alex’s blood pressures have been really good and labs look great on their end so they are going to stop rounding each day.

Hematology didn’t make any changes today. We will check labs again tomorrow morning and see if we need to adjust his blood thinner at all.

Our pulmonologist stopped by and is encouraged by how well Alex is recovering from a respiratory stand point. She would love us to do some pulmonary function tests before we leave the hospital  and we need to schedule an appointment with her.

Alex’s Clinical Therapist stopped by to check in. Him and Alex will have some time on Friday to meet and give Alex a space to work through his emotions about some of what has transpired.

Endocrinology is going to attempt to make a small adjustment down on his steroid dosing. Fingers crossed that is successful. They also let me know that Nephrology had checked some thyroid labs and they were off. We need to recheck those when we are farther out from surgery to see if there is truly a problem or if it was because of the trauma of surgery.

We are still waiting on Dr. O. I knew he would be late because Wednesday is his surgery day. I don’t expect him to make any changes.

The other thing is we are trying to wean off one of our pain pumps. Pain will look at how many times he needed it and make a decision tomorrow about whether to keep it or not.

Our nurse today has been excellent. I think that is all.

Ali

Tuesday Night

This will be quick because I desperately need sleep. The good news is we have been moved out of the ICU and back to the regular floor (not the floor we had hoped for). Alex has been on 1 Liter of oxygen most of the day and is only having desaturation with sitting or standing. We have stopped the continuous heparin drip for his clots and switched to shots of lovenox. The plan was for everything else to stay status quo. BUT I am still trying to figure out where the issue is whether it was the new hospitalist or surgery, but there were several orders that got changed that have caused me to be extremely upset. Some have been changed back and some have not. Someone switched his steroid frequency which could be catastrophic. Luckily, they called his endocrinologist who said absolutely not so it has been changed back. There was disagreement on his Gtube drainage bag and ultimately we just reverted to What we normally do. The biggest issue is that someone cancelled his TPN (IV nutrition) for tonight. Again I am unclear of what happened, but I think there is confusion as far as who is in charge between PICU, Hospitalist, GI and Surgery. Ultimately, we will need to have this all sorte out tomorrow.

Ali

Monday Night Update

I want to start by saying Thank you. Thank you for loving my boy so much and caring about how he is doing. Thank you for being patient and showing me grace when it takes me so long to update. In the hospital at times things move so slow and it seems you are waiting constantly to see a doctor to get a test result to find an answer and then at other times things move so very fast that you can barely keep up with the changes and the plans. This morning was the crazy frantic pace. This afternoon I am thankful for the waiting that means that Alex has stabilized to a point where the doctors and nurses don’t feel it is critical to make changes and order tests so quickly.

We never saw hematology again, but I do know that they found another clot. I am unclear of the details. I also know that at least one of his clotting labs is off. I am hoping to get a better feel tomorrow for what this means in the short and long term.

Dr. O came by this evening and he and i are both in agreement that Alex is not ready to have anything in through his Jtube yet. He has some bowel sounds, but they are not his normal and he has dark bile draining out of his gtube. We both know it is better not to push Alex’s body before he is ready or it will backfire and set us back further.

Last night and this morning left us seeing respiratory numbers we have never seen and are considered scary levels by doctors and nurses. Luckily, Alex stayed pretty stable from about lunch time on. He started on crazy high levels of oxygen with the non-rebreather mask whoever we would try to switch to a normal mask he would struggle again. Around lunch time they had us give 2 additional doses of a diuretic because sometimes with a Transfusion Reaction you can hold on to too much fluid. He peed off over 2 Liters this afternoon and is currently stable on 4 liters of oxygen through a nasal cannula. this is a HUGE improvement. we are hopeful he can stay at safe levels through the night and not need to go back to the mask. (4 Liters is the max you can give through a nasal cannula)

Alex is feeling less scared now that things have stabilized some. We still have some hurdles, but at least we are moving in the right direction.

Thank you for your continued prayers and support.
Ali

Monday Update

It is only lunch time and today has felt LONG! I woke up at 4:00 Am to the sound of the monitors alarming. Alex had misunderstood the nurse and thought he could switch from the face mask back to the nasal cannula. We let him try for 5-10 minutes, but he couldn’t get his saturation’s out of the 70’s so he went back to the mask. After that I was able to sleep for a few more hours. The overnight PICU doctor came in this morning before she was done with her shift. Based on presentation and the timing of when our issues started they have decided that the biggest cause of his respiratory distress is Transfusion Reaction Acute Lung Injury (TRALI). It is an extremely rare transfusion reaction. He has had hundreds of transfusion and never reacted before. They said this can happen to anyone at anytime. His X-ray did of course show some atelactisis or pneumonia as well. So for now we are just supporting him with really high levels of oxygen support. We were able to get him down to 9 lites on a regular mask for much of the night and morning, however exertion definitely makes things worse. He stood up to go to the bathroom around 10 and it set us back quite a bit and we still haven't recovered. He is currently on 14 liters on the non-rebreather mask which is a little more support than the regular mask.

After the PICU doctor we saw our surgeon. He ordered ultrasounds to be done to be certain there are no more clots. He really would like Alex to be able to get up and walk to help healing, but respiratory wise that isn’t possible right now. So no news from the surgery side. The good news is that the CT Scans did not show any bleeding.

Next, we saw our Palliative Care doctor who popped in to check on us and see if we needed any additional support.

Hematology was consulted and I was very excited when I saw that it was a hematologist that we saw for about 2 years. We really liked her (we stopped seeing her when Maddy had significant hematology problems and started seeing one of her partners. They decided to have both kids see the same Dr. to make life easier) She is now the specialist who rounds for thrombosis and strokes. She let me know that the pulmonary embolism they saw as tiny. They do not feel like that is the cause of any of our current issues. They are treating us based on his complex history and the fact that he had major surgery. Their bigger concern is if there are more clots. They have run a number of labs and ordered even more ultrasounds and an echo of his heart. I do not know the results of any of those yet. If they find no other clots he will stay on a heparin drip for several days and lovenox shots for the rest of his hospitalization, but not go home on any treatment. If they find more clots then that plan will change.

Pain team is not changing anything at this point. He is doing okay. We do not feel like he needs more pain medication, but we also don’t want to lower anything because we need pain to not inhibit his ability to try and take deep breaths.

We have not see Dr. o yet today, but I do not think he will change anything. Alex’s motility seems to have decided to join in on the fun and seems a little worse than yesterday.

I think that mostly catches you up...The only other thing I can think of is that after the transfusion his hemoglobin was 12.6. This morning it was 11.2. Surgery was not concerned. Hematology said that sometimes with transfusion reactions your red blood cells can “burst” even if you are not actively bleeding. So they are watching his counts closely.

THANK YOU so much for all of the prayers. All of the love. All of the meals and Starbucks. We are so grateful for all of the support. Please pray for ALex’s healing,  but also for his anxiety. It is scary to hear everything they are talking about and even scarier to feel like you can’t breathe. He is glad we are in the PICU because he feels safer knowing he is being closely watched.

Ali

Sunday Night Update

Sorry for the long delay. Forgive me if I repeat stuff I have already updated. I am tired and unsure of where I have posted what.
We saw Dr. Osuntokun and he added an additional antibiotic to cover if we have an infection brewing. When he was there we were on our first unit of blood and all was good other than another high fever. Towards the end of our second unit of blood, Alex started to feel worse and was very short of breath. His oxygen saturation’s starting falling and we ere needing to increase the amount of oxygen he was on. We paged surgery and they decided to do a chest X-ray and a ct scan of his chest and abdomen. He continued to struggle despite being on 4 liters of oxygen which is the most you can be on through a nasal cannula. When we got back to the room he continued to decline. We put on a mask and increased his oxygen. Even at 12 liters he was not able to get out of the low 80’s. They put him on a non rebreather mask and were able to get him up to 92 at the 12 liters. Surgery and hospitalist came back and let us know that his chest X-ray showed pneumonia or atelactesis in both lungs and his Ct showed a small pulmonary embolism. At that point it was determined that the safest option was to move him to the PICU.  He is stable at this point. They are watching labs closely and are starting a heparin drip to break up the clot in his lungs. We are both exhausted and desperately need sleep. He was really scared earlier, but seems okay now. I am glad we are in the PICU where they can watch him closely. Please pray we can get some rest tonight. I plan to update in the morning.
Ali

Sunday Update

Sorry it has taken me so long to update today. It has been a crazy morning. But let me back up to last night. Right at shift change (7:00), Alex told me he felt like he was running a fever so we checked and his temp was 101.5. We are trying to use medication to treat his fever pretty sparingly because he can’t have Tylenol and ibuprofen can increase bleeding. We got him settled and we both were in bed by 9:00. We slept well for a good chunk of the night again, but sometime early this morning (maybe around 4), I felt the nurse lay some extra blankets on me. Alex’s temp was back up to 103. Whenever he runs a temp they lower the AC as low as it can go. I literally have about 6 blankets on my bed now.  We slept some more.
Fast forward to this morning. His hemoglobin has dropped significantly again. (For my medical friends it was 14.9 on admission and is 7.1 now). Surgery was the first team by. They are watching closely. With the dropping blood counts and fevers, there is a strong possibility that he has a slow bleed somewhere. Alex’s complex history confuses the picture a bit because there are other scenarios for both the blood count and the fevers. So the plan is to transfuse him and see if counts fall again. If they do they will order a CT scan and possibly take him back to the OR to find and stop the bleeding. If there is a slow bleed it can cause a pocket of infection which would explain the fevers. They are encouraged because he “looks good”, but everyone is aware that that can sometimes be deceiving with Alex and that he can tank pretty quickly. So he is being watched closely.

The hospitalist came by shortly after and was in agreement with the plan. She is also checking blood cultures again, his clotting numbers and has order blood counts to be checked after transfusion and then again tomorrow morning. That should give us a good picture of what we are dealing with.

We haven’t seen Dr, O yet but I know he is watching and aware. A duplicate order got put in for the blood and no one could figure out what happened. Turns out Dr. o saw his labs and ordered blood. It makes me feel better to know that he is watching and on top of things.  I was originally told that his pancreatitis lab was significantly worse this morning, but was then told that it wasn’t checked. So I am unsure, but I do know that we are checking it again tomorrow.

We just started his first transfusion. He will get a second unit when this unit is done.

Thank you for checking on us and praying for us.
Ali

Saturday Afternoon

We have seen all of our doctors and don’t have concrete answers, but do have a plan! Surgery was in first. From their end everything seems good. Incision looks fine, nothing alarming. Next was pain team. We have been extremely happy with the attending that is on for pain this week. He is extremely knowledgeable and easy to work with. He explained that if a kid comes in for surgery for appendicitis  they will have some surgical incision pain for a couple days and then be good. But when you have a kid like Alex who has had serious GI issues for many years, the nerves in their GI tract are already inflamed and sensitive so the pain is a lot harder to treat and control and tends to last longer. It was helpful for Alex to hear and not get frustrated. We are back comfortable. As a matter of fact we did make one adjustment and take away something we didn’t think was helping that much. Before he had one pain med that was continuous. The other was continuous at a very low rate and he can push a button every 10 minutes to get a bigger dose as needed. We took away the continuous on that second med so he can push the button every 10 minutes, but won’t get it if not needed. Next the hospitalist and GI came at pretty much the same time. When surgery had been in they had wanted to try clamping his drain tube and were talking about trying some slow pedialyte through his Jtube tomorrow. Dr. Osuntokun examined Alex and is adamant that he is not ready yet. Dr. O has been our GI for over 7 years and knows Alex as well as anyone. We are grateful for his knowledge of our boy and the care he always takes to put Alex’s needs first. So he decided that we will stay the course until at least Monday and reassess. He also let the hospitalist know that Alex’s CBC is very abnormal for him even though it isn’t necessarily a CBC that would be alarming for others. To both Dr. O and I it looks as if there is likely an infection somewhere. He is also right at our transfusion level. His hemoglobin has fallen 5 points since pre-op labs so we will repeat another CBC tomorrow and if it has fallen at all or if he is symptomatic we will transfuse. If it drops much more I think we will have to consider making sure there is not a bleed somewhere, but we will cross that road when we get there.
So the rest of the day is just sit tight and relax. We were supposed to only due 48 hours of antibiotics, but we will continue until we know what is going on. Alex has slept quite a bit today which is great.
Thank you for everyone’s thoughts and prayers.
Ali

PS- Say a quick prayer for Maddy Moo, she is really missing Mommy. And poor Zoey is pitiful without Alex. She won’t leave his room.

Saturday Morning Update

I will start with the positives. Alex and I both slept well from about 10 until 4. Alex was much more comfortable and our nurse knew we were so tired so tried to be extra quiet for us.

Unfortunately shortly after 4 I heard some commotion and “39.5”. So for my friends who aren’t used to hospital life. Temps get taken in C and 39.5 equals a high temp (around103). My mom senses immediately got my tired butt out of bed as the lights flipped on. Our room was flooded with people and activity.  So a little about the way things work at cook children’s...they have a screening that is completed whenever they do vital signs. The screening assigns a number and if you score higher than a certain number you trigger a “sepsis alert”. It starts a chain reaction where the charge nurse, a respiratory therapist, the hospital isn’t on call and a Nurse Practitioner from the PICU come and evaluate and potentially give orders. Alex’s high fever and low oxygen saturation’s along with a few other factors triggered this alert. Ultimately, the PICU NP and I both felt he looked way too good and stable to even consider the PICU. However she did order some labs and a chest X-ray. At this point I do not have results other than word on the street is that there was quite a bit of gas in the small intestine that they could see so we may be doing another X-ray later. I will update more as I get more information.

After things settled down  and Alex and I fell back asleep, apparently his respiration’s were low. So the nurse turned off both pain pumps without talking to anyone. AHHHHHH!!!! Can you hear the screams. One of the medications was purposely chosen because it does not effect respiration’s, but she stopped that as well so Alex woke up in quite a bit of pain again and we are playing a bit of catch up. I am going to ask the pain team to put a note in the chart that no one should stop the pumps without calling them.

Our surgeon is here again today so we will see him and our GI comes on call today so we will see him as well along with the hospitalist and pain team. I am hoping for some answers and an uneventful day.

I will update later. Thank you for the prayers!
Ali

Day 2 Colectomy

I was just getting excited to write a positive post, but in typical Bug fashion he has thrown us a curve ball.
Alex had a rough start to the day. His pain was staying at an 8-9 and he was having trouble talking or breathing. He started having trouble with his oxygen saturation’s which were falling to the low 80’s. We started him on oxygen while we waited for the pain team to come and make more adjustments. We increased the amount of medication he could get when he pushes the button on his pain pump. When we still were having significant pain we added a second pain pump as well. Early afternoon we noticed him starting to feel a bit better from a pain standpoint and he was finally able to sleep for a few hours. However, he was still struggling to move without intense pain and his heart rate going into the 160 range. So we doubled the amount of med he gets through the second pain pump.

  So besides the improved pain control we also started to see a small amount of output from his ostomy which is great. All was looking up...

However, his blood counts have dropped by over 3 points and he just spiked a fever of 102. I am unsure of the plan right now as the doctors are being contacted. Please pray for answers and an easy resolution. I desperately need some sleep. I hope that things settle down so I can rest some tonight.

Ali

Surgery

What a long day...First let me apologize for the long delay in updates. Alex and I got to the hospital at 6:45 this morning. We were really happy to learn that our most trusted anesthesiologist was assigned to us. That meant I could breathe a sigh of relief and know that Alex was in the very best hands. Surgery started at 9:00. Everything went well as far as surgery. They removed Alex’s colon and were able to leave his existing ileostomy with only a minor revision. His surgeon came out to speak to me about 1:00. He ran into some adhesions and scar tissue, but overall all went well. Alex and i got up to our room around 2:30. We were not able to go to the floor that we have spent the most time on, but we have had some excellent nurses. Our biggest obstacle right now is we are having a really hard time controlling his pain. We have had multiple calls to the pain team and made some adjustments, but his pain has been in the 8-9 range all afternoon and evening. We are still working to try and come up with a better solution.
There are so many people I could thank, but since I am trying to make this quick...a special thanks to Sonny for keeping me company for over an hour and helping me get all of my stuff to my room and for a venti coffee which was much needed! To my friend, Amanda for keeping Maddy this morning and letting her swim so she wouldn’t be sad and worried. And to our sweet church friends who delivered multiple posters so I could make Alex’s room special for him.

Thank you to everyone who prayed today. Prayers for some pain relief and sleep tonight would be great.

Ali

Best Friends

Somewhere I read that this week is Best Friends Week. I am not sure if that is true, but for us it has been. We always feel blessed by the people in our lives, but this week has been a testament to the amazing friends we have. If I am being honest my emotions are raw this week. But everywhere I look I see the love surrounding us and I am so very grateful. (Disclaimer: we have strictly social distanced until this week, but we needed some hugs this week from our people. )

It started Monday with our sweet Ellie. Anyone who has read my blog for any length of time has seen countless pictures of Ellie and Alex through the years. They have known each other since they were very young, but their friendship grew in 5th grade and they have been the best of friends since then. Typically when we are going somewhere and Alex is allowed to bring someone it is Ellie who joins us on our adventures. I was so touched when Ellie reached out several weeks ago and asked if she could set up a Drive by party to celebrate Alex. Thank you to ALL of our friends who participated on Monday. It was magical to see Alex's face and hear his laughter as friend after friend from all walks of life drove by...27 in all. (the video we took is way too big to post)

Yesterday was a day I have been both looking forward to and dreading at the same time. Maddy's Kindergarten Graduation. It was a day that I knew would be special, but it also signifies the official end of our time at Building Blocks. Building Blocks has meant so much for so many reasons, but ultimately it comes down to the people and the love. When Maddy was 3, I wasn't sure if she would be able to go to school and I had never had the experience of sending one of my babies off to school before, but Building Blocks surrounded both Maddy and I and our whole family in love from day 1 and never let go. They have loved on Maddy when I couldn't be there, they have believed in her, they have supported us when times were tough, they have taught her so much and filled her with confidence. And then there is her Brookie Cookie. These two sweet girls chose each other day 1 and have been by each other side ever since. They have been the best of friends. From the beginning, when one is unsure they turn to the other and together they accomplish so much. From being scared to enter their classroom, to show and tell, to last night they stand together and build each other up with kindness and love. It is so hard to say goodbye, but I am SO Thankful for our three years.

Maddy Moo and Brookie Cookie

Maddy and Lincoln-"his princess"

Maddy and Mrs. Smith

Maddy and Kristin

Maddy and Mrs. Kimble

Maddy and Mrs. Wildemann

Ice cream to celebrate

Just like my kids, I have the best friends. As soon as my crew found out about Alex's surgery, several asked how they could help. And in the ensuing weeks even more have reached out. Several have set up a meal train to help us during this time. Any one who knows me, knows I HATE to ask for help, but a dear friend once told me I was taking away others joy being able to help so I had to allow it. So please know this is only for those who have asked...There are several ways to help us. 1. Meal train 2. I can order DoorDash and there is a Starbucks at the hospital. I drink A LOT of coffee when inpatient. Bruce may need someone to run to the store at some point if he runs out of something because Mad cannot go in stores right now due to her immune Deficiency. Most of All we need prayers for all of us over the next few weeks.

Thank you for loving us well through all our joys and struggles.

Ali

Meal Train Info:

Hey, This is the Meal Train for The Beckwith Family :

https://mealtrain.com/yon0wk

What is a meal train?

There are times in our lives when friends and family ask, "What can I do to help out?" The answer is usually to help them with a meal. When many friends give a meal, this is a Meal Train.

mealtrain.com is a free meal calendar tool that makes planning meals among a wide group easy and less stressful.

Happy 16th Birthday, Alex!

My Sweet boy-

How is it even possible that you are 16! I remember so clearly the day you were born and how lucky I felt to be your mom. I remember the cuddles and the smiles and the hours holding you, singing to you and thanking God for making me your mom. Your life has certainly not been what I thought it would be. Oh how I wish it was different for you and yet in some ways I don't. I think of all the amazing memories we have made over the past 16 years. I got to be your only teacher, to watch the excitement and wonder as you learned new skills.  I have been with you almost every hour of your life. We have formed an incredible bond that is born of shared experiences and struggles. We have always been a team, you and I. We have talked, we have yelled, we have cried and oh so often we have laughed. We are so much more than mother and son, we have become friends and trust each other implicitly. I have watched you persevere through impossible circumstances. I have watched your strength and your courage and your joy. I have watched you make an impact on all of those around you. And so my precious Bug, I still feel so incredibly lucky I get to be your mom. Thank you for making my dreams come true 16 years ago and for making me a better person every day. I love you more than you will ever know.

Mom

Surgery Update

This will be quick...Thank you to everyone who has reached out to us over the past few weeks. Your love means more than I can say. We have a date for Alex's surgery. It will be on June 11th. We will be inpatient a minimum of a week.
I will continue to update as we know more.

Ali